Occupational Therapy For MND

Occupational therapy
for motor neurone disease

About MND
• MND is a fatal, rapidly progressing disease
that affects the brain and spinal cord.
• It attacks the nerves that control movement
so muscles no longer work.
• It can leave people locked in a failing
body, unable to move, talk and breathe.
• It affects people from all communities.
• Some people may experience changes
in thinking and behaviour, with some
experiencing a rare form of dementia.
• MND kills a third of people within a year
and more than half within two years.
• A person’s lifetime risk of developing
MND is up to 1 in 300.
• Six people per day are diagnosed with
MND in the UK.
• MND kills six people per day in the UK.
• It has no cure.
Would you like to find out more?

You can contact our helpline MND Connect if you have any questions
about MND or want more information about anything in this booklet.
2
Contents
5 What is MND?
10 Multidisciplinary teams for MND
12 The principles of occupational therapy for MND
15 Assessment and outcome measures
20 Providing support
23 Mobility
26 Posture and positioning
31 Bed mobility
34 Transfers
36 Respiratory function
38 Cognitive change and frontotemporal dementia (FTD)
42 Communication
47 Fatigue management
53 Driving
54 Work
56 Eating and drinking
58 Self care
65 Accessible home
67 Social and psychological support
75 Funding and finances
81 Palliative care
85 Looking after yourself
87 Useful resources
87 References
90 How we can support you
This guide has been endorsed by the

Royal College of Occupational Therapists
3
Introduction
Motor neurone disease (MND) is a rapidly progressive and ultimately
fatal disease that results in degeneration of the motor neurones
in the brain and spinal cord.1 Although there is no cure for MND,
occupational therapists have a crucial role to play in supporting
people to adapt to changing symptoms of MND and have the best
possible quality of life.
Care of people with MND requires up-to-date knowledge about the
condition and the ability to manage its complexity, to anticipate
change and provide timely interventions. This booklet provides an
overview of MND and its effects, and the role occupational therapists
can play.
Information for you

Information sheet P1 – Head supports for people with MND
Information sheet P2 – Wheelchairs for people with MND
Information sheet P11 – Pain in MND
Information to share
Living with MND – our main guide to help people to manage daily
life with MND.
Making the most of life with MND – focuses on how people can
adapt their approach to continue doing the things they want to.
Information sheet 6A – Physiotherapy
Information sheet 6C – Managing pain
Information sheet 11C – Equipment and wheelchairs
Information sheet 11E – Environmental controls
Download from www.mndassociation.org/publications or
contact MND Connect to order hard copies. Call 0808 802 6262 or
email mndconnect@mndassociation.org
4
What is MND?
Motor neurone disease (MND) is insidious in its onset and
development. The initial stages, speed and pattern of progression can
be variable. Not all symptoms necessarily happen to everyone, nor do
they develop in the same order or progress at the same rate.2
MND results in progressive muscle weakness and wasting, usually first
affecting limbs, trunk or bulbar regions, without sensory disturbance.
This can lead to decreasing mobility and postural changes. MND can
affect adults of any age. However, incidence is highest in people aged
55-79, and onset below the age of 40 years is uncommon.3
Common initial symptoms
MND can present as isolated and unexplained signs or symptoms,
which may include:
• stumbling, falls or trips
• foot drop
• loss of dexterity
• weakened grip
• cramps
• fasciculations
• change in voice quality, such as quiet or slurred speech
• a wareness of swallowing changes, such as having to
‘double swallow’
• muscle wasting.3
First symptoms may progress to:
• loss of function of limbs
• weakness and wasting of muscles of the trunk and neck
•p rogressive weakness of bulbar muscles, leading to dysphagia and
dysarthria, affecting speech, eating and drinking, and clearance of
thin or thick tenacious saliva3 or mucus.4
Respiratory muscles are likely to be involved later in the disease,
leading to breathlessness and signs such as daytime sleepiness,
fatigue, morning headaches or shortness of breath when lying down.3,5
5
Up to half of all people with MND experience some degree of
cognitive or behavioural change, ranging from mild effects to
noticeable impairment, and up to 15% will develop frontotemporal
dementia (FTD).3
As an occupational therapist, it is vital to consider that most people
with MND will become increasingly dependent upon others and
equipment as the disease progresses.6
Additional symptoms
• fatigue – this is common throughout the disease7
• difficulty managing secretions, including saliva
• emotional lability – inappropriate or excessive crying or laughter8
• anxiety and depression9
• pain and discomfort from muscle cramps or spasticity10
• insomnia5
• constipation.11
6
Prognostic factors
A third of people with MND die within a year of diagnosis and
more than half die within two years. It is well recognised that some
individuals live considerably longer than the average survival times.
Cause of death is almost always respiratory failure as a result of muscle
weakness and/or repeated chest infections, often due to aspiration.1
The following factors, if present at diagnosis, are associated with
shorter survival:
• speech and swallowing problems (bulbar presentation)
• weight loss
• poor respiratory function
• older age
• lower Amyotrophic Lateral Sclerosis Functional Rating Scale
(ALSFRS or ALSFRS-R) score20
• shorter time from first developing symptoms to time of diagnosis.3
Variants of MND
MND is the term used in the UK and Australia to denote various
diseases of the motor nerves, classified by whether they affect upper
motor neurones (UMN), lower motor neurones (LMN) or both. There is
considerable overlap between the different forms of MND.
Clinical presentation is sub-divided in two ways: by the presence of
upper motor neurone (UMN) and/or lower motor neurone (LMN)
signs, and the anatomical area first affected.12
• Limb-onset MND affects around two-thirds of people with MND.
• Bulbar-onset MND affects around a third of people with MND.
• Respiratory-onset is rarer, affecting around 3%.12
It is important to be aware of the presentation and prognosis of the
disease in order to plan and anticipate a person’s needs.
7
Amyotrophic lateral sclerosis (ALS)11
•m ost common form, accounts for over 80% of cases of MND
• characterised by a combination of muscle wasting with spasticity
• arm, leg or bulbar (speech and swallowing) onset
• bulbar region is usually affected, but may not be prominent in
everyone with ALS.
Note: In some cases, people initially present with features of

primary musclular atrophy (PMA) or primary lateral sclerosis
described below, but go on to develop more typical ALS.12
Progressive muscular atrophy (PMA)12, 13

• accounts for 5-10% of people with MND
• limb onset, with muscle wasting and weakness, often with visible
twitching or rippling under the skin, known as fasciculations
• ‘flail arm’ falls within this group, characterised by slowly
progressive, symmetrical, and usually upper limb weakness
• s urvival is often longer than seen in ALS, typically more than four
years. If someone presents with a single flail arm or leg, survival is
often five to 10 years or more from onset.
8
Primary lateral sclerosis (PLS)2,12,14
• accounts for approximately 3% of all people with MND
• characterised by spasticity/brisk reflexes
• balance is often impaired
• survival is notably longer - more than 10 years from symptom onset,
with many people living a typical lifespan
• some people with PLS may experience bladder involvement, in the
form of spasms and urinary urgency.
Progressive bulbar palsy2,11

• a term used to describe bulbar onset MND
• accounts for approximately 5% of cases of MND
• a small number of people with bulbar-onset MND have symptoms
relatively confined to the bulbar region for several months
(occasionally years), before it moves to involve the limbs
• muscles in the upper limbs, neck and shoulder girdle may become
progressively weaker
• characterised by rapidly progressive speech and swallowing
problems, often with emotional lability.
Kennedy’s disease37
Although it is not a type of MND, the MND Association also provides
support for Kennedy’s disease, which causes progressive weakening,
wasting of the muscles and hormonal changes. The principles in this
guide may still be applicable, however it is worth noting that the
disease progresses more slowly and most people with Kennedy’s
disease live an average life span.
Information sheet 2B - Kennedy’s disease
Information sheet 2C - Primary lateral sclerosis
Information sheet 2D - Progressive muscular atrophy
9
Multidisciplinary teams for MND
The NICE Guideline on MND recommends that care should be
delivered by a coordinated multidisciplinary team (MDT) with
expertise in MND. This way of working allows prompt referrals to other
relevant health and social care professionals as needed.3
The MDT should be responsible for assessment, management and
review of:
• weight, diet, nutritional and fluid intake, feeding and swallowing
• muscle problems, such as weakness, stiffness and cramps
• physical function, including mobility and activities of daily living
• s aliva problems, such as drooling of saliva (sialorrhoea) or thick,
tenacious saliva
• speech and communication
• cough effectiveness
• r espiratory function, respiratory symptoms and ventilation (NIV)
• pain and other symptoms, such as constipation
• cognition and behaviour
• psychological support needs
• social care needs
• advance care planning and end of life care needs
• information and support needs of the person, their family and
carers.3
An occupational therapist should be part of the core MDT, but
may also be a member of a team the specialist MDT accesses. This
may include specialist palliative care and hospices, social services,
orthotics, rehabilitation, wheelchair and assistive technology services.3
Occupational therapists supporting people with MND should aim to:
• l iaise with occupational therapists in different settings, particularly
to avoid repeat assessments
• liaise with professionals from other disciplines to ensure
integration of systems, for example, wheelchairs with AAC devices
and environmental control systems
10
• coordinate visits with other professionals where possible
• s ignpost the person, their family and carers to relevant services.
Information for you

Multidisciplinary team working for MND
Information sheet 1A - NICE guideline on MND
What you should expect from your care - a pocket-sized booklet to
help people with MND have discussions about the treatment and
care recommendations from the NICE guideline on MND.
11
The principles of occupational
therapy for MND
In order to help the person with MND to participate in occupations
that are important to them and their family, the occupational therapist
should consider assessing and advising on, among other things:
•o ptimisation of meaningful activities of daily living, and what is
important to the person
•m aintenance of social and leisure activities for as long as possible
• m odification of the home environment to take account of
declining function and mobility and occupational performance
• r aising awareness of safety
•p osture and positioning
• fatigue management and conservation of energy
•p sychological strategies
• s elf management
• a voiding undesired hospital admission
•u se of adaptive equipment, include potential future needs,
allowing this to be planned and organised ahead
• facilitation of meaning, quality of life and well-being
•p roviding support around physical, emotional and spiritual issues
•p romoting a positive approach to death.
Equipment may include aids to support personal care, posture and
mobility. This may include specialist head and neck supports, static
seating and wheelchairs, mobile arm supports, switches and other
devices for accessing computers and using environmental control
systems. See Providing support on page 20 for more information.
Occupational therapists can:
•m aximise functional abilities as far as possible to minimise the
impact of MND on activities of daily living
•h elp the person adjust to changing roles
• facilitate the realisation of meaningful goals
12
•o ffer person-centred assessment and intervention
•e xplore and trial strategies to enable choice and control
• f acilitate exploration of future needs so interventions, adaptations
and equipment can be implemented in a timely manner
• s upport people with MND and their families to express choice,
have control and develop goals together, helping people to
redesign their lives and life goals
•e xplore interventions, equipment and strategies to address
physical and psychosocial problems to enhance participation in
everyday activities
• s upport people with MND to achieve good quality of life in a
holistic way throughout the course of the disease (from diagnosis
to death)
• s upport family and carers, throughout the course of the condition,
and in bereavement, where possible. It is important to identify
what is important to them and how this may vary from what
is important to the person with MND to ensure they are both
supported.
By exploring and offering possible solutions, the person is offered:
• s upport to adapt to changing symptoms
•m aintenance of occupational participation and quality of life
• c hoice and control.
13
Promoting choice and control
People with MND have described living with the condition as
experiencing a ‘series of losses’, including the loss of future plans and
hopes, abilities, independence and control over their life.
As occupations shape our identity, feelings of self-worth and connect
us with people, occupational therapists can use occupations as a
vehicle to help someone exercise choice and control in their lives.
Occupational therapists should not have to give or explain a diagnosis
of MND, as this is the role of the specialist neurologist. However, the
occupational therapist will be able to explore the impact of living with
the disease with the person with MND.
They can explore losses experienced and facilitate future planning to
minimise the impact of further deterioration.15
The occupational therapist may have to address difficult questions as
the disease progresses. The person with MND may ask questions such
as “When will I have to use a wheelchair?” or “When will I stop being able
to manage the stairs?” It is important to answer these questions openly
and directly. This booklet may help you provide appropriate guidance.
Discussions about potential difficulties before they become an issue
can help to reduce delays in accessing equipment and support.
14
Assessment and outcome measures
Occupational therapists use a range of frames of reference and
theoretical models to guide and underpin their practice. Use of a
model can indicate appropriate assessments and outcome measures
to use.
The NICE Guideline on MND recommends repeated, ongoing
assessment and review, and continuity of care, as the disease can
progress quickly.
Timely, holistic assessments, covering physical, psychological,
emotional, social, spiritual and financial needs, are essential for creating
and reviewing comprehensive care plans for a person with MND.3
Occupational therapy is client centred and it is important that a
person and the person’s family and carers, identify their own goals
and priorities. It is important to recognise that these may not be
the same and the OT is key in supporting people to make informed
choices about their ongoing management of MND.
Selecting an appropriate assessment tool

The focus for any occupational therapy assessment is to analyse the
person’s strengths, skills and needs in carrying out occupations, and
how the environment supports or inhibits this. Assessment should
anticipate future needs as much as the presenting ones.
Adapting assessments, tools or outcome measures reduce their
validity or reliability, and as such standardised assessment tools
should not be adapted or changed.
Alongside occupational therapy assessments, practitioners should be
aware of, and where possible, select tools that have been specifically
designed for MND.
When selecting an assessment tool, consider:
• information already gathered from previous assessments
• r eason for referral
•e xpectations of the person and their family
• t he purpose of the assessment.
15
The assessment process
Assessment needs to be holistic and timely. Within the assessment
process, occupational therapists should:
• consider all areas of needs, functions and domains
• establish a list of main concerns, anticipated future needs and
prioritise goals
• be mindful of the type of MND and likely rate of progression
• anticipate future needs based on diagnosis and what is important
to the person
• consider the key impairments and occupational difficulties, as well
as identifying existing strengths
• consider the potential impact of cognitive or behavioural changes,
both on the assessment and any interventions suggested
• consider the person’s insight into their current strengths and
weaknesses and how this may affect their judgement and safety
• discuss functional ability and roles
• consider activity analysis and observations
• allow sufficient time for the individual to discuss difficulties, taking
into account any communication or cognitive needs, and fatigue.
Assessments may need to be completed over several contacts
• consider the person’s response to their diagnosis and their
acceptance of interventions, recommendations and involvement
of specific services
• be aware of local support services and charities available to the
individual and carer, and make early referrals to them
• involve other professionals as needed throughout the disease course
• arrange regular reviews of the person’s ability and carers’ needs
• identify whether a welfare benefits or financial check is required,
and refer to appropriate support.
16
Carer and family needs
The assessment should acknowledge and address the needs of the
person with MND, their carers and family, including children. This
can help to build a relationship with those who may be the person’s
primary means of support. The occupational therapist should consider:
• immediate needs and anticipate future needs
• a plan for introducing support for the carer and person with MND
• intervention to ease burden of care as far as possible
• early identification of potential risks which could lead to
breakdown of care and implement plan to help prevent this
• discussions about agencies to support the carer as necessary, for
example counselling, psychology, GP or our MND Connect helpline
(see page 2 for contact details)
• asking the carer if they want to be referred for a carer’s assessment.
Information for you

Supporting children and young people close to someone with MND
Caring and MND: support for you - our main guide for carers
When someone close has MND - our activity workbook for 4-10
year olds
So what is MND anyway? - our guide for teens.
MND Buddies - our online activity hub for young children - visit
www.mndbuddies.org
Storybook - Why are things changing?
Information sheet 10G - Support for families with children
17
Sharing information after assessment
Systems need to be in place to ensure all relevant health and social
care professionals can access current information about the person’s
needs, preferences and advance decisions.
Practitioners should be aware of the involvement of other
occupational therapists and avoid replicating assessments
unnecessarily, in line with any local information governance policies
that apply.
Review
MND is a progressive condition, so ongoing, regular review should be
built into any service provided.
The NICE Guideline on MND advocates regular, ongoing monitoring of
the person’s mobility and daily living needs and abilities. Equipment,
adaptations, daily living aids, assistive technology and wheelchairs
must be regularly reviewed and updated to meet the changing needs
of the person with MND, their family and carers.3
A person’s needs may change rapidly, and the NICE Guideline on
MND recommends that untimely case closure should be avoided.
It is important for continuity of care that the same health care
professionals stay involved with a person’s care throughout the course
of the disease. This helps build relationships between the person, their
family and the therapist, and also promotes seamless care
and interventions.
Use of outcome measures

Any intervention plan arising from the assessment should have clear
outcomes. Outcome measures should be used to:
• promote wellbeing, by identifying and measuring what the person
with MND considers important in their lives
• record progress towards meeting the person’s goals, including the
actions of the occupational therapist(s)
• measure the effectiveness of intervention.
18
The use of standardised outcomes can be challenging.16 It can be
difficult to provide meaningful outcome measurements when the
disease may be progressing rapidly.17 People with MND are adjusting
continually to changing symptoms and level of disability, so their
experience of MND and what is important to them is individual.
Research has shown little correlation between perceived quality of
life and severity of illness18, so any outcome measures should aim to
capture and measure what is important to the person and their family.
Useful resources
ALSFRS-R
The Revised Amyotrophic Lateral Sclerosis Functional Rating Scale
(ALSFRS-R) is a tool for evaluation of functional status and change
in people with MND. Research has shown that ALSFRS-R scores
correlate significantly with quality of life scores in MND.20 Visit
https://pubmed.ncbi.nlm.nih.gov/10540002 for more details.
The Allied Health Professions (AHP) Outcome Measures UK

Working Group, a cross-disciplinary group representing a number
of professional bodies including Royal College of Occupational
Therapists, has developed a checklist, Key questions to ask when
selecting outcome measures: a checklist for allied health professionals.
It is designed to assist allied health professionals and teams with
selecting outcome measures. The checklist is intended to guide
discussions and support decision-making. It contains some key
questions to ask when considering which outcome measure is
most suitable for your area of practice. The checklist is available to
download from www.rcslt.org/outcome-measures-checklist
NICE Quality Standard on MND (QS126)

The NICE Quality Standard on MND draws attention to specific,
measurable aspects of good care for MND, allowing health and
social care professionals to assess whether they have the structure
and processes in place to meet them. Visit
www.nice.org.uk/guidance/qs126
19
Providing support
Occupational therapists should proactively anticipate what
equipment and adaptations may help to enable the person with MND
to participate in valued occupations.
Timing of interventions
MND is rapidly progressive. The NICE Guideline on MND recommends
provision of equipment and adaptations that meet the person’s needs
without delay, so that people can participate in activities of daily living
and maintain their quality of life as much as possible.3
In order to reduce any potential delays, the guideline advocates
anticipating and planning for potential future needs, to allow enough
time for support or equipment to be put in place.
Service delivery models should enable prescribing of equipment that
may fall outside of standard eligibility criteria to ensure maximum
benefit of any equipment provided.3
Although anticipatory prescribing is ideal, this should be done in
partnership with the person and their family to avoid causing any
potential distress.
Psychological impact of interventions

Occupational therapists should talk through assessment findings and
recommended interventions, but be mindful that people living with
MND and their families may not agree with those recommendations.
People may be resistant to the idea of using equipment, as they are
reluctant to acknowledge increasing disability and progression of the
disease. Where someone has reducing independence in activities of
daily living, they may exercise control over their situation by declining
assistance, such as care or equipment.15
It is important that the occupational therapist establishes a rapport
with the person with MND, their family and carers. This will help to
facilitate discussions involving functional loss and future planning to
minimise crisis situations occurring.
20
Without appropriate and timely intervention, someone experiencing
deterioration may find their independence and activities restricted,
leading to feelings of despair and frustration. For further information,
see also Social and psychological support on page 67.
Making the most of life with MND - focuses on how people can
continue doing the things they want to do.
Emotional and psychological support - includes how to seek
support and the different therapies available.
What can the occupational therapist do?

Occupational therapists should work with the person to fully explore
the benefits and potential problems of using a piece of equipment, to
ensure the person can make an informed decision about whether to
accept it or not.
Explore with the person what it is about the actvity that they can no
longer do that they got pleasure from, so an alternative occupation
can be found which meets the same needs.
Ensure all possibilities and ideas are explored, without being
influenced by what is available through statutory services alone. Some
people may be able to fund solutions that would not be possible
through statutory services, and so it is important to explore these
options to enable the person to make a fully informed choice.
Listen to the person’s reasons for refusing the equipment and
acknowledge these, whilst making recommendations for intervention.
Remember that the pace and manner of acceptance of the diagnosis
and prognosis of MND will differ for every person.
It is best to have an open door policy so the person can contact you
when they are ready to accept help, or need further assistance.
21
It is important to consider the impact of providing equipment on how
a person feels about their home, and how they interact with their
family within their home. Creative solutions may be required when
considering particular types of equipment.
For example:
Possible barrier Potential solution
Adaptations that Consider blending a ramp into the
change the look of the existing property rather than using an
home, associating it obvious metal structure. Encourage
with disability the person to consider their enhanced
independence as a result of adaptations.
Single profiling beds Is a direct payment available for a
affect intimacy and double bed where one side has profiling
maintenance of features? Alternatively, consider a single
emotional and profiling bed alongside a standard single
physical connection bed. It is worth noting that double
between couples.20 profiling beds can potentially prohibit
care if two carers are required, as only
one side of the bed is easily accessible.
Resistance to living on Interim hired stairlift while the person is
a single level of able to safely use one and continue to
the home plan for the future. Discuss positives such
as being able to go outside, if downstairs.
Information sheet 11C - Equipment and wheelchairs
22
Mobility
MND is characterised by progressive muscular weakness and most
people with the disease will eventually be affected by reduced mobility.
However the speed and pattern of progression is variable.2 Those
with bulbar-onset MND may retain independent mobility for longer,
although prognosis is often poorer, with more rapid progression.3
Within the occupational therapy assessment, a need for further input
from a physiotherapist, orthotics or a wheelchair service may be
identified. Common reasons for further input include footdrop, falls or
enhancing gait.
Exercise
Active or passive exercise, as recommended by a physiotherapist
experienced in neurological conditions, can help a person with MND
maximise their range of movement and mobility and help to maintain
good balance and posture.3
Equipment
When first experiencing problems with mobility, people with MND
may use walking aids such as sticks, frames and rollators to support
walking. Grab rails can help with mobility within the home or where
a stick or frame cannot be used. However, progressive weakness in
upper limbs and trunk will limit how long these are useful.
Wheelchairs23
As MND progresses, most people will need to use a wheelchair.21
Initially this may be to aid energy conservation, but over time,
dependency on a wheelchair for mobility tends to increase.
It is important that a person with MND has a holistic wheelchair and
seating assessment as early as possible.
This should account for the progressive nature of MND and determine
what will best suit the person’s changing needs. For example, someone
may be able to manage standard wheelchair control initially, but as
MND progresses, they may not be able to use this.
23
It is important to consider all the possible symptoms of MND. For
example, if someone experiences cognitive change, this may affect
their ability to operate a powered wheelchair.
A timely referral to wheelchair services is critical. This will ensure that
the service can work with the person with MND and other agencies to
ensure wheelchair access is being considered at the person’s home and
that they can come to terms with the type of wheelchair they will need.
The NICE Guideline on MND recommends that, if needed, people
with MND should be referred to wheelchair services without delay,
followed by assessment and provision of a manual or powered
wheelchair that meets the person’s ongoing needs.3
The MND Wheelchair Pathway focuses on the provision of wheelchairs
in a timely way and to a specification to meet the users ongoing
needs. The challenging changing nature of MND means that
equipment needs to be provided in at an appropriate time. The
wheelchair also needs to be able to adapt to the changing needs of
the user and it is essential that the user and carers are able to use the
equipment properly. As with all equipment provided, ongoing review
of its use and suitability is essential.
Information for you

Wheelchair Pathway for MND
Transport
Larger manual and electric powered indoor/outdoor wheelchairs
(EPIOC) are difficult or impossible to transport in an unadapted vehicle.
Boot hoists may be appropriate for some vehicles but will require
folding or removal of the chair backrest. This option requires the
person living with MND to transfer into the car seat, and so its
effectiveness may be time limited.
24
A wheelchair accessible vehicle (WAV) enables the wheelchair to be
driven into the vehicle and allows the user to travel while seated in the
wheelchair. A WAV may be available through the Motability scheme
if the person is eligible. There are also wheelchair accessible hire cars
and taxis. See Driving on page 53.
Information for you

Information sheet P2 – Wheelchairs for people with MND
Information sheet 12A - Driving
Information sheet 12B – Choosing the right vehicle
Information sheet 12C – Travel and transport
Specialist MND wheelchair services

The MND Association funds specialist therapists who may be able to
provide support to local wheelchair services through training, joint
assessments, advice and support to find the right wheelchair solutions
for people with MND.
If the person with MND experiences problems accessing a specialist
assessment or obtaining an appropriate wheelchair, please contact
MND Connect. See page 2 for contact details.
25
Posture and positioning
As MND progresses, mobility and comfort can become more difficult
to manage. Changes in muscle activity, including possible cramps
and spasticity3, will affect alignment and the response of the body to
movement, sitting and lying. If a body segment is falling in a certain
direction due to weakness, gravity will exacerbate the effect, also
pulling the body segment in this direction.23
Some people with MND may initially experience weakness in their
shoulders, arms and hands. This is often referred to as ‘flail arm’.
Due to muscle weakness and the weight of the arms in the arm and
shoulder joints, there is a risk of partial dislocation (subluxation) of the
shoulder joint. It is essential that people are advised on positioning
and assisting movement.
Consider:
• the carer supporting the arms when moving
• t he person having their arms supported, either by armrests or with
pillows/cushions while seated
• referral to orthotics for shoulder or arm support
• complementary therapies, such as massage and acupuncture.
Weakness in the neck and upper back muscles can cause head drop.
Weakness in the trunk can cause a person to slump or slide forward in
a chair.23
Seated posture
As MND progresses, the person will spend more time sitting and will
be less able to adjust their own position or stay upright against the
effects of gravity.
Inadequate support can lead to poor posture, affecting function and
distribution of weight, which may lead to pressure sores. This can be
further affected by neck and trunk weakness, and potential curvature
of the spine (kyphosis).23
The preferred position for someone with neck weakness is tilted back,
with their arms, back, head and neck supported.23
26
The aim is to support posture to maximise function, while minimising
risk of deformity and pressure injury. This may be achieved with
seating with greater postural support, including a backrest shaped to
the spine.23
Options may include:
• a posturally supportive armchair
• a riser/recliner chair with a waterfall type back to support the neck
and lumbar region of the spine
• more supportive seating if indicated following assessment
• tilt-in-space wheelchairs, offering more gravity assisted postural
correction (see pages 23-24)23
• s eparate back rest and seat adjustments for posture and comfort
• wide arm rests with pressure relieving qualities
• wheelchair head supports.
Pressure sores
Risk factors for pressure sores in MND:
• reduced ability to move and therefore relieve pressure in seating
•p oor posture in sitting resulting in loading over a small area, which
results in higher pressure over the supporting area
• sliding forward on the seat (which can result from trunk weakness
where tilt in space is not used) resulting in shear forces over
the buttocks
• inadequate seating (including shower / bathroom chairs) which do
not accommodate or support postural limitations
• loss of soft tissue mass resulting in vulnerable bony prominences
• inadequate nutrition and weight loss due to swallowing
problems.23
Consider:
• p eople with MND retain sensation, so will know when they need to
move, or need help to be moved
• t hose with communication difficulties may not be able to express
that they want to be repositioned
27
• appropriate cushioning for seating and wheelchairs to provide
pressure relief
• s eating (including shower and bathroom chairs) that
accommodates and supports postural limitations
• use of barrier creams.23
Head and neck support
Head drop can result from weakness in the neck, shoulder girdle
and long back extensor muscles, leading to difficulties with correct
positioning for speaking, breathing and eating.24
A tilt-in-space feature on a wheelchair or riser recliner armchair, and
lateral tilt on a profiling bed, can help to counter the effects of gravity
and help keep the trunk and head in a more upright position. Seating
backrests should accommodate the shape of the spine to enable the
head to be supported.
It is important to have adequate arm support, as the weight of the
arms can pull the upper body forward and exacerbate curvature of the
spine. Supporting the arms can also help open the chest cavity to aid
respiration.
28
There is not one type of support that will be suitable for everyone
with MND, and different ones may need to be trialled before finding
the right one. Sometimes, a combination of collars will be required for
different situations.
Many people will choose not to wear their collar all the time. Because
MND is progressive, needs will change over time, making ongoing
reassessment essential. A simple, soft collar may be tried as a first step
in the early stages of neck weakness, and may be used as an interim
measure until a collar providing more support is required.
A range of supports are available for wheelchairs and these should be
considered alongside the postural support gained from
the wheelchair.
People living with MND retain sensation, so can experience discomfort
associated with immobility. It is therefore crucial that a collar fits
correctly and does not create pressure points.
Forehead bands give freedom around the chin, mouth and throat,
making it easier to eat, drink and speak, but may place too much
pressure over the forehead.
Many people with MND experience swallowing problems as a result of
bulbar weakness.12 A collar with an anterior area cut away may make
swallowing easier.
Practical solutions, such as a roll of foam under the chin with a Velcro
fastening, can offer some relief in certain circumstances. Use these
solutions with caution and only after conducting a full risk assessment.
Seek advice from a second occupational therapist to ensure suitability.
Information for you

Information sheet P1 - Head supports
29
Splinting
Contracture can result from muscle weakness and the inability to
move joints through a full range of movement. In addition, upper
motor neurone lesions can result in spasticity, decreasing range of
movement and pain.
To help maintain a level of function and independence in joints, and in
muscles unaffected by MND, length and range of movement must be
maintained to limit the adverse effects of stiffness.25
Where appropriate, splinting may be used to provide a prolonged
stretch, and facilitate function through improved range of movement
in joints. The NICE Guideline on MND advises referral for orthotic
services to help with muscle problems.3
30
Bed mobility
Issues may include:
• inability to lift legs into or out of bed
• difficulty sitting up from lying down
• d ifficulty turning in bed
• d iscomfort with increased loading through the shoulder and hip
joints when people are lying on their sides, often worsened by a
reduction in soft tissue
• pressure sores resulting from limited movement and inability to
adjust positioning.
NHS provision is normally only available for the person living with
MND so this will likely mean a single profiling bed.
It may be possible to access funding through direct payments or
personal health care budgets which can enable a couple to purchase
a double bed with independent variable tilt, which may be more
acceptable to them. Another option would be to place a single
profiling bed beside a regular bed of the same height.
Transfers
Depending on level of need, options may include:
• rails and bars to aid bed mobility
• low friction slide sheets (advise on nightwear to avoid excessive
slide)
• a static or powered pillow lift
• raising a bed to allow clearance for a mobile hoist under the bed.
This will also help with sitting to standing transfers
• a profiling bed, which can help with moving from lying to sitting,
sitting to standing, or standing to sitting (with variable height).
See Transfers on page 34 for more information on safe moving and
handling, including hoisting.
31
Pressure care
Consider:
• pressure relieving mattresses or mattress toppers
• a voiding memory foam mattresses, as the person sinks in and may
find it more difficult to move
• a bed cradle to relieve the weight of bedclothes
• lightweight bed clothing
• an electric blanket in winter, with lighter bedclothes.
Supported positions to consider

Side Lying:
Rather than laying directly on one side, encourage a quarter turn on to
the back, pulling the shoulder forward. You can support this position
with a rolled pillow positioned behind the back (tucked under slightly
to prevent it rolling out).
Place a pillow in between the thighs, knees and lower leg to reduce
pressure and pull on joints.
Supine Lying (lying on back):
Place a pillow under head and shoulder.
Help flex the hips by placing a firm support under the knees to
prevent sliding when the bed head is elevated.23
Bed safety
Discuss the advantages and risks of bed rails and cot sides, if these are
being considered. These are widely used to reduce the risk of falls, but
may bring other risks, such as the person becoming trapped between
the bars, or rolling over the top of the bar. The wide range of bed
rails, beds, mattresses and other equipment in use, together with the
person’s individual needs means a thorough risk assessment is essential.
Further information is available from Medicines and Healthcare
Products Regulatory Agency at:
www.gov.uk/guidance/bed-rails-management-and-safe-use
32
Breathlessness
Breathlessness on lying flat (orthopnoea) is often one of the first
signs of respiratory insufficiency in MND.5 The person may wake with
headaches or not feeling rested, and may feel tired during the day.
Refer any change in symptoms to the person’s MND specialist or
respiratory team.
Lying flat can worsen respiratory symptoms. A semi-reclined position
is likely to be more comfortable for a person with MND, particularly
those experiencing respiratory problems.
Consider raising the head with more pillows, a pillow lifter or a
powered, profiling bed. Select one that provides variable tilt, reverse
tilt positioning and auto-regressing head rests (eg four section
profiling beds).
The bed should lift from the hip rather than the abdomen, which may
further compromise respiratory function.
If non-invasive ventilation (NIV) is used, the person will most likely
have to sleep on their back, with the head of the bed raised. Support
under the shoulders, arms and legs is important.
33
Transfers
The NICE Guideline on MND recommends that the person with MND
and their main carer and family should be given advice on safe
manual handling.3
Transfer boards or belts, slide sheets and turntables may be
considered while a person with MND is still able to weightbear.
Transfer ability usually continues to deteriorate, as limb strength and
function decline. Hoisting may be necessary as MND progresses.
Hoisting
By the time hoisting needs to be considered, the person with MND
will have already experienced much functional loss. Accepting the
prospect of hoisting can be difficult for some people. It is essential to
provide the person with reassurance and time to consider the need for
a hoist, in order to facilitate acceptance and allay fears.
For those with respiratory involvement in particular, posture and
positioning is crucial, avoiding compression of the chest and torso.
Full training for the person, their family and carers is critical, and may
help to calm fears and improve confidence in hoisting.
A ceiling track hoist may be more suitable than a portable or fixed
hoist as MND progresses, saving space and reducing manual handling.
Hoist slings must be fitted to the individual, with the correct sizing
specified in a hoisting plan.
A specific hoist may be required for bathing and toileting, as there
is no clearance beneath a bath or toilet to fit a hoist. If a person has
a stairlift, a hoist may be needed on each floor for transfers so the
person can continue using it.
Getting up and down the stairs

Early discussion with the person with MND, their family and carers
is essential to ensure a plan is in place for managing each stage of
disease progression. It is important to discuss longer term plans for
accessing facilities within the home earlier than the person may wish
to think about it. Adaptations could take a long time and have costly
implications if not planned in advance.
34
Consider how someone will be able to manage in the short, medium
and long term. For example, a stair lift may enable someone to access
upstairs for a period, depending on the rate of progression of MND.
However, if there is no scope to use the stair lift in the long term, it
would not be sensible to adapt a first floor bathroom. Consider how
they will mobilise on each floor of the house.
Access upstairs may be provided by:
• handrails on both sides of the stairs – for as long as leg mobility
and hand and grip strength are maintained
• a stair lift – although this may be a time limited option. As MND
progresses, the person may find it difficult to transfer on and off
the seat and maintain a safe posture when seated
• a through-floor lift will give wheelchair access on each floor,
without having to transfer in or out of it. Assessment for suitability
is needed, as not all homes can accommodate this option.
35
Respiratory function
Bulbar weakness contributes to various respiratory complications,
including increased risk of aspiration, weak cough and abnormal
respiratory patterns.
Respiratory insufficiency usually arises late in the course of the disease,
due to involvement of the diaphragm and accessory muscles. It is the
usual cause of death in people with MND.
For some patients, breathlessness, reduced vocal power, poor sleep
quality or daytime fatigue may be the initial presenting symptoms.
Rarely, patients are admitted via accident and emergy departments in
respiratory distress without any other symptoms.
Monitoring for signs and symptoms

The specialist MND or respiratory team are responsible for the
ongoing assessment and monitoring of respiratory symptoms. This
allows for timely interventions that can improve or maintain quality of
life. This may include non-invasive ventilation (NIV), which has been
shown to improve survival and quality of life.
Any new or changed respiratory symptoms should trigger referral to
the specialist team.
The occupational therapist can advise on:
• posture and positioning, including solutions to counter
breathlessness on lying flat, or to ensure a slightly reclined position
when seated
• fatigue management
• using fans and increasing air flow to reduce psychological feelings
of breathlessness
• techniques and strategies to manage anxiety or breathlessness.
The MND just in case kit

The MND just in case kit is designed to hold medication for the relief
of anxiety and breathlessness. Its presence in the home provides
tangible evidence for people with MND and carers that fears have
been addressed and practical help is at hand.
36
Once the need for a kit has been discussed and agreed with the person
with MND and their carer, their GP orders a kit from MND Connect (see
page 2) for a named person with MND. The kit is supplied free of charge.
The GP prescribes medication to be supplied with the kit.
Information for you

Information sheet P5 - Managing respiratory symptoms in MND
Information sheet 8A – Support for breathing problems
Information sheet 8B – Ventilation for MND
37
Cognitive change and
frontotemporal dementia (FTD)
Through occupational assessments and observations, occupational
therapists may notice changes in cognitive ability and recommend
further assessment.
Occupational therapists should be aware of the potential for changes,
query as necessary and make sure cognition is assessed. They can
help to describe and explain the nature of the impairments and the
implications of these on functional ability to the person and their family.
There is now increased awareness of cognitive and behavioural
changes in MND, and people affected by the disease may fall into one
of four groups:
• around 50% are unaffected by cognitive change
• a round 35% experience mild cognitive change, with specific
deficits in executive functions, language, behaviour and/or social
cognition
• u p to 15% develop frontotemporal dementia (FTD), either at the
same time or after diagnosis of MND
• u p to 15% of patients with FTD go on to develop motor
impairments where MND is diagnosed after dementia.
Keep in mind that up to half of people with MND will experience
some degree of cognitive change. Changes may be subtle or more
noticeable and may cause problems with:
• learning new tasks, including the use of equipment (such as
powered wheelchairs or environmental controls)
• lack of awareness or insight into their problems or their impact
• poor concentration
• inappropriate social behaviour
• impulsivity, which can include repetitive or persistent actions and a
tendency to consume sweet foods
• literacy and language
• making decisions, reasoning and problem solving
38
• planning for the future
•m anaging affairs and finances
• inflexibility in thought or how activities are undertaken. Others
may perceive this as stubbornness.
Not all of the above may be evident and they can vary in degree.
Changes can be subtle and may be masked by movement and speech
problems. Some may be part of the normal ageing process.
Information for you

Cognitive change, frontotemporal dementia and MND
Changes to thinking and behaviour with MND
39
Screening for cognitive change
Occupational therapists may take a role in screening for signs of
cognitive and behavioural change using the Edinburgh Cognitive and
Behavioural ALS Screen (ECAS). Other screening tools are available,
but ECAS has been specifically designed for use with people with
MND. It can be used by any trained health or social care professional.
The training and the ECAS tool are available at:
http://hdl.handle.net/1842/6592
Where indicated, refer to a clinical psychologist for a full assessment
and advice on management. Alternatively, liaise with the person’s
consultant.
Impact on occupational therapy interventions

Being alert to the possibility of cognitive and/or behavioural change
at any stage of MND can be valuable, as these changes may impact
on service use and decisions. Occupational therapists can advise on
strategies and techniques to adapt to change, and how family and
carers can support a person to remain engaged in daily living.
If someone is affected by cognitive impairment, management
strategies should focus on forward planning and organising
appropriate support for the person with MND, their families and carers.
If cognitive change has been identified, all members of the
multidisciplinary team should be informed, allowing them to react
and implement any changes needed in care planning.
Considerations:
•d iscussions around interventions and advance care planning
should be started sooner rather than later, with additional support
to aid and check understanding
• a speech and language therapist may avoid introducing complex
communication options
•p rofessionals may choose to give information that is easier to
understand, or in a different format
• l evels of support provided around the home may increase
40
• c hecks may be required to enable safety in the home – eg
removing or locking away items that could be used inappropriately
• c linical neuropsychology services, where available, may be
involved in care
•w orking with care providers to ensure carers are familiar with
potential issues
• k eep care teams small so that the person is confident in them and
gets to know them and vice versa.
Ongoing reassessment of needs is essential. Cognitive or behavioural
change may not affect daily life at first, but issues may emerge when
the person faces new challenges and has to make significant decisions
about their care.
Emotional lability (pseudobulbar affect)

Some people with MND experience laughter and/or crying at
inappropriate times, which is difficult to control and may not reflect
how the person is feeling. For example, someone may laugh at
inappropriate times, such as at a funeral or when they experience pain.
This is an involuntary motor response, and is not related to, or a sign
of, cognitive change.
Recognition that this is a symptom by the person with MND and the
people around them can provide reassurance.
Not reacting to the emotional response can help to reduce the impact.
For example, if someone is crying but not emotionally upset, it may
be helpful to ignore it.
There is medication available that may help to treat this symptom.
Refer to the specialist team.
Emotional and psychological support
41
Communication
Weakness of bulbar and respiratory muscles leads to many people
with MND experiencing slurred, quiet or complete loss of speech.
Communication problems can also have a psychological impact,
including isolation, frustration, increased fear and anxiety, low
self esteem and loss of self determination.
Information for you

View our webpages at:
www.mndassociation.org/forprofessionals/dysarthria
Information sheet P10 - Voice banking
Information sheet 7C - Speech and communication support
Information sheet 7D - Voice banking
Occupational therapists should work closely with the speech and

language therapist assessing the person’s communication needs.
It is important to establish what strategies or equipment someone
is currently using to aid communication, before exploring with
the person their wants, needs, motivations and expectations of
communication aids.
An occupational therapist may support communication with:
• s eating, positioning, wrist, hand, finger, head and neck supports
• s witches and pointers
•m obile arm supports
• t ables to access communication aids
•e quipment to support computer use for communications such as
email and social media
• environmental controls.
42
43
Communicating with someone with MND
The following suggestions may already be familiar to occupational
therapists who frequently work with people with MND and
communication difficulties.
• Allow extra time to assess needs as it may take great effort for a
person with MND to communicate.
• Find out how the person with MND prefers to communicate, and
what equipment they like to use.
• Establish whether it is acceptable for you to complete their
sentences.
• Find out whether the person uses a simple code for “yes” and “no”.
This can be a movement of any part of the body, such as blinking.
• Using closed or direct questions can assist the conversation.
• Remember that unspoken communication is important.
• Ensure the person with MND is the focus of communication.
• Check back with the person on what you think has been said and
admit when you do not understand.
• P
eople may persevere with speaking and you may be unable to
understand them. Sensitively encourage them to use another
method to communicate to minimise their frustration and
facilitate conversation.
Try not to:
• alter the rate or volume of your speech, unless the person with
MND has asked you to
• fi
nish the sentences of the person with MND, unless they ask you
to, and avoid interrupting them
• u
se a family member or carer as a translator for the person with
MND, unless it is clear that this is what the person with MND wants
• ask complex questions that require long or difficult answers and
take up time and energy
• ask open questions. Simple questions that can be answered with
yes, no, or a single word are easier when speech is difficult.
44
Digital communication
As technology progresses, more people with MND are using apps such
as Zoom, Microsoft Teams and FaceTime. Virtual appointments, check-
ups and support groups are becoming increasingly common, and may
be more convenient for the person with MND.
In addition to the communication suggestions on the previous page,
the following may be helpful:
•G ive your full attention, maintain eye contact, listen closely, as if
you are in the room with them.
• E nsure you can see the person’s lips and can clearly hear them.
•G ive the person plenty of time to respond.
•A ccept any method of communication that they choose – some
people will type in the chat box if they feel it is better, others write
on paper and show it to the screen.
• I f another person is on the call is helping the person to be
understood, check first if the person with MND is ok with that, and
then confirm that what was said by the other person is correct.
• I t is good practice to find out ahead of time what AAC a person is
using, and how it may be easier to use in a video call.
• S ome AAC software allows the words / speech to be added into the
video call from within the app – for example Grid 3 can connect
to Skype or Microsoft Teams, and Predictable can connect to
Facetime sessions.
• I t is often possible to ‘cast’ a phone or a tablet screen to a video
call. Check with the speech and language therapist or other team
members if they have done this.
•H ave a back-up, just in case the AAC device is not available – the
person may also use a low-technology AAC system, or a carer may
be able to help.
•A lways consider what will happen if your connection breaks or the
quality is not good enough.
• Some device speakers may not be loud enough. A bluetooth
speaker can help.
45
Augmentative and alternative communication
Early referral to a speech and language therapist can ensure
assessment of range of movement in lips, tongue and palate,
and advice on strategies for communication and provision of
augmentative and alternative communication (AAC).
The NICE Guideline on MND recommends the involvement of
occupational therapists to ensure AAC equipment is integrated with
other assistive technologies, such as environmental control systems
and personal computers or tablets.3
Voice banking
Voice banking is a process that allows a person to record a set list of
phrases with their own voice, while they still have the ability to do so.
This recording is then converted to create a personal synthetic voice.
When the person is no longer able to use their own voice, they can use
the synthetic voice on communication devices to generate an infinite
number of words and sentences.
The voice created will be synthetic and not be a perfect replica of
the person’s natural speech, but it will bear some resemblance. The
speech and language therapist can assist the person to arrange this.
Information for you

Information sheet P10 - Voice banking
Information sheet 7D - Voice banking
46
Fatigue management
Many people with MND experience fatigue, contributing to poor
quality of life. It can affect people in different ways, but is usually
experienced as an overwhelming tiredness that occurs gradually or
suddenly, often not in proportion to activities being undertaken.
Signs of fatigue may include:
•p rolonged exhaustion after physical activity or very little activity
• f eeling tired on waking (note that this may be a sign of respiratory
impairment)
• l imbs that are heavy and difficult to move
• f eeling too tired to carry out activities
• difficulty concentrating.
Cause of fatigue in MND

Fatigue appears to be experienced as an inability to sustain motor
function and as generalised tiredness. It tends to worsen throughout
the day and is only partially relieved by rest.26
Increased muscle weakness, wasting and problems with mobility
will lead to muscles tiring more quickly. This, combined with other
metabolic changes, can lead to fatigue. People with MND may also
experience fatigue due to other aspects of the condition:
• l oss of physical function
•b reathing problems or breathlessness. Carbon dioxide retention
(hypercapnia) can result from weakened respiratory muscles and
may contribute to feelings of fatigue
• s leep problems – because of breathing problems, difficulty with
bed positioning and the psychological impact of MND.
• s ide effects of some medications, including riluzole, the only drug
available for the treatment of MND in the UK
• l ow mood or depression
• low calorie intake and weight loss, resulting from swallowing
problems, decreased appetite or other problems affecting
nutritional intake.
47
Impact of fatigue
Fatigue, and the anticipation of fatigue, may affect a person’s
motivation to continue with some of the activities of daily living. It can
also be aggravated by stress, which may be triggered by the conflict
between wanting to continue activities and finding it more difficult to
do so.
If fatigue is not recognised, a person often experiences peaks and
troughs in their ability to function. For example, when someone feels
well they carry out lots of activity that results in feelings of extreme
tiredness and fatigue, leaving the person needing to rest and be
inactive for a few days in order to recover. Once recovered they feel
well enough to engage in activity again.
Assessing fatigue
The Neurological Fatigue Index for MND (NFI-MND)26 is an eight-item
fatigue summary scale, with separate scales for measuring fatigue
experienced as:
• reversible muscular weakness
• feelings of low energy
• whole body tiredness.
The Index may be applicable when assessing a person’s balance of
occupations. For further details, see: http://medhealth.leeds.ac.uk/
info/732/psychometric_laboratory/1493/scales
Management of fatigue
Every person with MND has a different experience of the condition, so
it is often not possible to predict the activities that will make them
feel fatigued.
It is important to ensure MND symptoms and treatments are well
managed. With all interventions, consider the balance between
promoting independence, with subsequent effects on self esteem and
dignity, against management of fatigue.
48
Occupational therapists may give advice on:
Keeping a fatigue diary – encourage the person to keep a log of how
they feel after each activity. This may help to judge which activities
leave them feeling fatigued and help them to plan their days.
Energy conservation – help the person to prioritise activities that
mean the most to them and their quality of life, so they can preserve
energy for those particular tasks or events.
Accepting help – encourage people to accept help for tasks that are
less important for them to complete independently, enabling them to
have the energy to do the activities that are most important to them.
Prioritisation list – when completing a list of tasks carried out during
the day, it is helpful to encourage the person to rate the tasks in order
of enjoyment and importance to them. This can aid the person to
decide on tasks to delegate, do differently or do less frequently.
Encourage flexibility – in routines, but also in how long tasks take
to complete.
Regular rest breaks – the person may want to consider incorporating
regular rest breaks between activities and short naps, especially
before going out, or planning rest days before important events.
Travel – getting around may require a lot of effort and be stressful
and tiring for the person. Planning ahead will ensure more time is
allocated to travelling, preventing the need to rush and allowing
for breaks.
Living environment – assess and discuss the person’s living space
in order to help them save their energy, considering grab rails,
placement of chairs etc.
Body temperature/clothing – excessive heat can lead to tiredness,
while coldness can cause muscles to feel stiff and tight. Layers of loose,
lightweight clothing can provide insulation, but also be easily removed.
See Clothing on pages 60-61.
Modifying activities – discuss changes to activities such as sitting
down to complete chores, and taking time to complete tasks rather
than trying to complete everything quickly.
49
Equipment – let the person with MND know about any equipment
or other solutions that may help with conservation of energy, for
getting around, eating and drinking, using the toilet and bathing and
showering, for example wearing a towelling robe to dry the body.
Sleep – advise on sleep patterns and techniques to ensure a better
night’s sleep, and ensure symptoms are managed eg respiratory
problems, muscle cramps and spasticity. A profiling bed may make
breathing and positioning easier at night. See Bed mobility on page 31.
Some practical tips you can share with the person include:
• k eeping organised, avoiding wasted energy searching for items
• s itting rather than standing where possible
•u sing an electric toothbrush or razor instead of a manual one
•w earing clothing that is easier to put on and take off
• r esting before and after taking a bath or shower
•m aking larger meals and freezing extra portions for another day
• s oaking dishes before washing and leaving them to dry on a
draining board
• s toring regularly used items in easy reach
•p lacing chairs around the house for rest
•p ushing, sliding or rolling items, rather than lifting
•h iring professional help, such as cleaners or gardeners
• having groceries delivered.
50
Referral to other professionals will be required for management of:
Nutrition and hydration – losing weight can affect energy levels. A
speech and language therapist may assess swallowing and discuss
changes to diet consistency, while a dietitian can assess and advise on
weight management, nutrition and hydration, including alternative
feeding methods such as gastrostomy.
Muscle cramps and spasticity – muscular pain may disrupt sleep
patterns. Exercise cannot reverse damage to muscles weakened by
MND, but can help strengthen muscles not yet affected. Too much
exercise can lead to additional fatigue. A physiotherapist can advise
on exercise, and a prescribing professional may prescribe medication.
Respiratory insufficiency – the specialist respiratory team can assess
symptoms and discuss options for management. A sleep study may
determine whether disrupted sleep is a result of breathing problems.
Medication review – discussion will be needed on whether the
benefits of medication to treat a symptom outweigh the side effect
of fatigue. If the person is taking riluzole and experiencing extreme
fatigue, withdrawal of the medication may be considered.
Employment
If a person is still working, fatigue may affect their ability to perform
duties at work.
Employers have a responsibility to look at how MND affects how a
person does their job and to allow flexible working or put measures in
place to help them to carry on working for as long as the person feels
it is possible. For further information see Work on page 54.
Information sheet 11D - Managing fatigue
51
Driving
All people with MND are legally required to inform the DVLA or DVA
immediately after diagnosis. Failure to do so is a criminal offence
and the person could be fined up to £1000, or prosecuted if they are
involved in an accident as a result of being disabled.
In most cases, they will permit the person to continue driving until
weakness and/or cognitive change compromise safety. However, their
driving ability may need to be assessed first. This can be a contentious
issue, and needs to be handled with sensitivity.
Consider adaptations to a person’s existing vehicle that can facilitate
continued driving or being a passenger, such as:
• d riving controls, such as steering wheel aids, alternative hand and
foot controls, infrared or wireless controls, easy release handbrakes
• a ccess to the vehicle: swivel seats, transfer boards, hand holds, hoists
and leg lifters
• wheelchair or scooter storage
• boot hoists or wheelchair accessible vehicles for drivers or passengers.
These options are at a cost to the individual and may only meet their
needs for a short period. For example, a boot hoist still requires the
person to transfer into the car. For those with slower progressing
forms of MND, these options may be worth considering.
A wheelchair accessible vehicle (WAV) is the preferred solution for
those not able to transfer easily in and out of a standard vehicle. New
or second hand cars can be converted to WAVs, or these may be
available as ready made options. Some companies have adapted cars
or WAVs to lease.
Advise the person to consider a test drive and a driving assessment
at a mobility centre. Visit www.drivingmobility.org.uk to find your
local centre.
The person may be eligible for the Motability scheme. Bear in mind
that a person applying for the first time will not be eligible if they are
over 65 years old. Visit www.motability.co.uk for further information.
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Information sheet 12A - Driving
Information sheet 12B - Choosing the right vehicle
Taxis
Many taxi firms offer accessible vehicles that can accommodate
a standard manual wheelchair. Finding a taxi able to carry a large
electric wheelchair can be difficult. Taxi drivers will not accept
passengers unless there is enough space between the top of the
person’s head and the taxi ceiling.
Public transport
Using public transport can be challenging for someone with MND, but
careful planning can make this easier. Advise the person to:
• p lan their journey early
• c onsider all parts of the journey, including at departure and transfers
• d iscuss their needs with any travel agents, tour operators, transport
organisations and accommodation they will be using
•m ake sure any equipment they are taking is in good working order
• a llow extra time in case of any delays
• b ook any help needed in advance
• research the destination, and take contact details for local facilities
such as pharmacies, wheelchair repair shops etc.
Information sheet 12C - Travel and transport
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Work
A person who is working when diagnosed with MND may want
to continue for as long as possible; others may want to plan their
departure or leave straight away.
Leaving work may raise financial and emotional concerns. Work can
provide a sense of purpose and social contact and leaving this behind
may be difficult, especially as it is not necessarily out of choice.
If the role is stressful or physically difficult, leaving may be a relief.
In the case of some physical jobs, it may not be possible to carry on
working for safety reasons.
If someone wants to stay in work:
Certain tasks may be more difficult or take longer to complete. Fatigue
may also be a factor. Talk to the person with MND about:
• a daptations to the work environment
• t he Access to Work scheme - visit www.gov.uk/access-to-work for
more information
• a daptations to tasks and exploring other ways of working
•e quipment including assistive technology to support computer use
• changes in working hours or working from home.
Information sheet 10E - Work and MND
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Eating and drinking
Swallowing difficulties (known as dysphagia), saliva control, decreasing
mobility and use of ventilation will affect the ability to prepare food,
and to eat and drink. There are also social implications for those who
feel self-conscious eating with others or in a social setting.
A dietitian should monitor the person’s weight and nutritional intake,
working with a speech and language therapist to introduce a diet that
maximises nutritional intake.
The specialist team should also discuss the potential for feeding via
gastrostomy as soon as possible, as early placement is recommended.27
Early access to a dietitian may not be available in all areas, so the
occupational therapist may need to consider weight and request
urgent referral as needed.
The NICE Guideline recommends assessment and management of
factors related to swallowing, eating and drinking that come under
the responsibility of the occupational therapist. These include:
•p ositioning, seating and posture
• s trategies for eating and drinking in social situations
•u se of eating and drinking aids and adapted utensils
• advice and help with food preparation.3
Posture
Consider:
• t he position for eating – what type of chair, where table is in
relation to the chair, and the distance between plate and mouth
(how far they have to lift food to reach mouth)
• a n upright posture and tucking the chin down to the chest when
swallowing can prevent food aspiration
• head and neck supports, and how they can support or hinder
eating and drinking (see page 28-29).
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Equipment
Consider, where appropriate to the individual:
•n on-slip mats
• k eep-warm plates
• a rm supports
•e lectronic feeders
•m odified cups, mugs, plates and bowls
• s traws with non-return valves
•m odified cutlery to help with grip and control
•h eight adjustable table
•h ead and neck support to ensure an appropriate position for
effective swallowing (see pages 28-29)
•d rinking aids
• a portable suction unit to help clear the mouth of debris.
Information for you

Information sheet P8 – Dysphagia in MND
Information sheet P3 – Managing saliva problems in MND
Information sheet P9 – Oral suction
Information sheet 7A – Swallowing difficulties
Information sheet 7B – Tube feeding
Eating and drinking with MND – information on how to adapt food
and drink, as well as easy-swallow recipes.
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Self care
Equipment and adaptations can maximise the independence of a
person with MND, but as the disease progresses, they are likely to
need support to manage their personal care.
The needs and preferences of the person with MND should be
discussed, with information and support provided as needed.
Wherever possible, personal care should be carried out by familiar
care workers, known to the person, their family and carers, ensuring
continuity of care.3
Caring for a person with MND: a guide for care workers
Bathing and showering

As well as modifications to activities, occupational therapists may also
consider equipment, such as:
• s hower seats, and particularly tilt-in-space shower seats with
head extensions for those with trunk weakness or respiratory
insufficiency
•g rab rails and non-slip mats
•b ath boards or a mechanical bath seat
• a powered or manual hoist to transfer in and out of the bath
• a ccessible, level access shower cubicles or a wet room
• c ommode and shower chair.
Even if not needed at first, it is important to consider the person’s
long-term needs, allowing time for support, equipment or adaptations
to be put in place.
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Getting dressed and grooming
As dexterity progressively reduces, these may help to maintain
independence:
• l eg lifters, sock aids and shoe horns
•b utton hooks and zip pullers
• l ong handled hairbrushes and hands free hair dryers
• a lternative fastenings eg sew buttons on outside of shirt to give
the appearance of buttons, but use Velcro to fasten the shirt
•d ry shampoo or shampoo caps.
Clothing
With MND, comfort and ease of dressing can become an issue. People
may experience difficulties managing fastenings or reaching parts of
their body. Needs will progress over time, but suggest lightweight
fabrics and looser fitting items that improve comfort and reduce
frustration when dressing and undressing.
Advise on:
• s uppliers of adapted clothes and local services that can adapt
clothes for ease and comfort
• t emperature control, such as good fabric choices for keeping cool
or warm, wearing layers of loose, lightweight clothing, warming
clothes before dressing, and considering thermal skiwear ranges
• c lothing with no or simpler fastenings, such as elastic shoelaces,
large D-rings and Velcro to adapt belts and zips, front fastening
bras or sports bras with no fastenings
•d ressing aids, such as zip pulls, button hooks, dressing sticks and
shoe or sock devices
• i tems for protection and warmth when outdoors (eg quilted bags,
capes, covers, hand muffs, to use with wheelchairs/scooters).
Consider:
• l arge neck openings and loose sleeves
• s tyles that allow for easy access to go to the toilet – refer to local
continence service if needed
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• s tyles that are suitable for sitting for long periods of time
• fi ngerless gloves that keep hands warm but allow grip
• s ilk or satin materials for movement in bed – but these may cause
sliding, affecting posture and positioning
• c lothes with pockets for keeping small items to hand
• a djusting current clothing, such as a Velcro strip down the back of
a suit jacket can aid getting on and off if someone is seated
•p oncho style capes instead of heavy coats
• a ppropriate length of clothing to reduce the risk of trips and falls.
Avoid:
•h eavy or tight garments that can restrict movement and may make
problems with mobility and arm function feel worse
• c lothing in fabrics that are itchy or ride up easily – these can cause
discomfort when seated for long periods.
If a person experiences drooling due to problems swallowing saliva,
this may be managed with:
•n eck scarves
• a dult bibs and tabards
• c lothing adapted to include waterproof panels
•d ark coloured patterned tops.
Footwear
Shoes should be the correct width, supportive and fasten securely. If
someone experiences foot drop, consider a foot-up device. If a person
uses foot supports, footwear may need to be wider or larger than usual.
Information sheet 11A - Clothing
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Toileting
While MND rarely affects bowel and bladder function, immobility may
affect the ability to get to the toilet in time, and loss of muscle activity
can affect the strength required to defecate. People with MND may also
be at risk of contipation due to other factors such as changes in eating,
dehydration, anxiety or medication. It can be common for the person
to sit on the toilet for a long time, so a suitable toilet seat is essential.
Maintenance of dignity and self-esteem are paramount. Consider aids
to support independence:
Specialised equipment - such as a bottom wiper, with a long looped
handle and a paper grip.
Adapted clothing - for ease of access during toileting. Specialist
underwear and disposable pads may be considered if there are
concerns around timely access to the toilet.
Wash and dry toilets - for those with reduced mobility, a toilet with
wash and dry facility can help to maintain hygiene, independence and
dignity. There are types to replace the existing toilet, or to fit over it.
Wheelchair toileting - some wheelchair cushions have a removable
wedge that can be taken out to enable toileting with a female
urinating device or urinal bottle.
Additional equipment - to aid transfers, a raised toilet seat, frames,
grab rails and hoists, will ensure the toilet can be used for as long as
possible.
Continence equipment and aids - for use at home or when
travelling, such as a urinary sheath or urinal bottles.
Catheterisation - may be considered for some people with MND, in
consultation with the specialist team. This is usually due to transfer
difficulties. Occupational therapists may have to address transfer
issues more effectively to help prevent the need for a catheter and
avoid associated risks, such as infections.
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Oral hygiene
Muscle weakness, dysphagia and a high calorie diet can all affect
maintenance of good oral hygiene.
Strategies and equipment may help a person maintain their own
oral hygiene for as long as they can functionally do so. Advice and
equipment may be sought from dental hygienists and dental therapists.
A family carer or care worker may need to attend dental appointments
to learn techniques for mouth care at home.28
Access to the dentist can be challenging. Some dentists may have
hoists and wheelchair recliners. Alternatively, any health or social
care professional can refer a person with MND to a community dental
service, which may offer home visits.
Refer to the person’s GP or MND specialist team for management of
saliva problems.
If the person cannot tolerate a toothbrush in their mouth:
Some people may be reluctant to brush their teeth due to brisk gag
reflex or concerns about choking.29
• E ncourage better positioning, with an upright, seated position, the
chin level or downward, and the head turned slightly to one side.
• I ntroduce toothbrushes and other mouth cleaning items into the
mouth gently, and use slow movements.
• T ry a softer toothbrush (eg a child sized toothbrush).
•C onsider a toothbrush attachment for an oral suction unit.
For limited arm strength or movement, suggest:
•p ropping elbows on supporting surface, placing the toothbrush on
to the teeth and moving the head from side to side
•h olding with two hands
• a lightweight cordless electric toothbrush
• l ong handled toothbrushes
• t hree sided toothbrushes that brush all sides of the tooth at once.
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For problems gripping the toothbrush, try:
• l arge toothbrush handles
• a polystyrene foam ball pushed on to the handle of a toothbrush
•p ipe lagging from a DIY store wrapped around the handle
•e lastic bands on the handle to aid gripping.
For swallowing difficulties, suggest:
•n on-foaming, dissolving, ‘no rinse’ toothpaste for those concerned
about choking on standard toothpaste or mouthwash
• a toothpaste that does not contain sodium laurel sulphate
•p reventive treatment with fluoride gels (with cotton swabs) or
mouthwash rinses.30
If a person with MND uses a feeding tube:
• a dvise that oral hygiene is still necessary even if food or drink is not
taken by mouth.
If a person with MND uses a suction machine:
• t his can be used to remove excess saliva and toothpaste
• a specialist toothbrush accessory can be attached to the machine.
If a person with MND has problems opening their mouth:
•p ressing gently on the chin below the bottom lip may help the
mouth to open more easily
• a bite block or mouth rest may be used to keep the mouth open
during brushing
• fi nger protectors may be used by carers assisting with oral hygiene.
Information for you

Information sheet P12 - MND information for dental teams
Information sheet 11B - Mouth care
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Accessible home
The NICE Guideline on MND recommends that the person with MND
should have prompt access to assessment for home adaptation.
Occupational therapists should proactively anticipate what equipment
might be required to enable the person with MND to continue with
valued occupations.
Any potential adaptations to the home environment should
be considered well in advance to ensure time to implement
recommendations and funding.
Environmental controls
Environmental controls can enable a person with MND to control
electrical devices when they can no longer access them via the usual
means (remote controls, door locks, telephone etc).
Environmental controls can offer independence with a range of
activities including:
•o perating a TV, radio and other electronics, eg computer
•m aking phone calls
• c ontrol fans or heaters
• a nswering the door
• a djust an electronic profiling bed
• c all for assistance
•o pening and closing curtains.
Many systems can be operated by wireless technology using a laptop,
tablet or smartphone. Adapted switches are available to suit the
person’s needs, and can be controlled using different parts of the
body, such as the head, eyes, mouth or foot.
A referral to environmental controls services or adult social care
services should be considered. Some technology and interfaces are
readily available on the market.
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Information sheet 11E - Environmental Controls
Access
An occupational therapist should assess access to and around the
home, bearing in mind immediate and potential future needs. Among
other things, consider:
• l arger door handles
•m ultipurpose knob turners and key turners
•h ands-free telephones
• s tair lifts or through-floor lifts
• c omputer access equipment
•e nvironmental controls, including switches
•e xtended plug sockets and plug pulls
• l iaison with other services that impact on accessibility, such as
wheelchair services
•g arden access.
Safety at home
For home safety, consider:
• a cordless or mobile phone positioned close by or carried by
person, or a smart wrist watch that includes a phone function
• a n alarm worn as a pendant or on the wrist that automatically
alerts emergency services or particular contacts if help is needed
•e nvironmental controls with alarm function, as well as options to
operate the TV, lights, door entry etc.
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Social and psychological support
Social, recreational and leisure activities
As outlined in the NICE Guideline on MND, the person’s needs and
preferences should be discussed, with information and support to
help them access work, social activities and hobbies, including access
to social media and physical access to activities outside their home.3
Consider voluntary organisations and charities that can help facilitate
access to leisure activities.
A compensatory and adaptive approach should be taken to the
modification of activities, to support participation and maintain
quality of life.
Making the most of life with MND
Emotional and psychological support
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Psychological and emotional impact of MND
MND is characterised by a series of losses and change, with the
accompanying issues of grief and bereavement.
People with MND and those close to them often experience
considerable psychological and emotional distress.9
Emotional reactions may include:
•d enial of diagnosis and what it means
• a nger as a result of frustration and loss of control
• f eelings of hopelessness, in recognition that many of life’s
expectations will never be realised
• f ear of ‘choking to death’ or ‘fighting for breath’
• l oss of independence and dignity
• i ncreasing dependency and becoming a burden
• i nability to cope and loss of control
• f ear of the unknown, death and the process of dying.
The impact will be influenced by other factors, including the person’s
age, personality and life stage.
Spiritual beliefs, current life stresses, cultural background and the help
and support they receive will affect the person’s ability to cope. Much
can be done to alleviate distress, help people to adjust and make the
most of their coping skills.
Allow the person to express thoughts, feelings and concerns to
help identify information and support needs. Remember that
communication problems or cognitive change may affect the ability of
someone with MND to share their thoughts and feelings.
•G ive information to help the person and their family make sense
of what is happening, to maintain control and make plans, without
overwhelming them.
•C heck information needs regularly and give opportunity for people
to return for more detail.
•P otential carers may want information early, to help them prepare
for their future role.
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• S ignpost to further sources of emotional and psychological
support, including the MND Association online forum, Association
visitors, local branches and groups, and the MND Connect helpline.
•R eferral to appropriate health care professionals eg psychologist
• E nsure any sleep problems are assessed appropriately, with
management options explored.
• E ducate the person on coping strategies to manage anxiety.
Anxiety and depression

It may not be easy to diagnose depression, or differentiate it from
the symptoms of MND. However, formal screening of anxiety and
depression should be considered for people with MND and carers.
There are a number of screening tools that any health and social care
professional could consider using with the person, such as Patient
Health Questionnaire 2 (PHQ-2), the Hospital Anxiety and Depression
Scale (HADS).
Psychological impact of interventions and adaptations

Changes to the home may be particularly challenging for some people
with MND to accept. If MND progresses rapidly, someone may quickly
need changes to their home, which may be seen as a reminder of their
progressive disability.
Consider the impact of equipment in a holistic way, including how it
will affect the family and roles within the family. Certain equipment
may affect closeness, intimacy and sexuality. For example, moving
into single beds where the person with MND has a profiling bed may
be difficult for a couple to accept.
Roles and relationships

Parents and grandparents with MND
All professionals should take a family-centred approach to the care
of people with MND, considering the needs of the person and those
close to them holistically. The needs of any children in the family
should be considered, particularly if there is the potential for them
to provide care at some point in the future. Referral for an early help
assessment, or a young carer’s needs assessment, should be a priority.
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Information for you
Supporting children and young people close to someone with MND
Caring and MND: support for you - our main guide for carers
When someone close has MND - our activity workbook for 4-10
year olds
So what is MND anyway? - our guide for teens
MND Buddies - our online activity hub for young children - visit
www.mndbuddies.org
Storybook - Why are things changing?
Partners who become carers

When one partner is diagnosed with MND, the balance of the
relationship may change. If the person with MND has been the main
breadwinner, the potential effect on finances can lead to additional
strain. It may be particularly challenging if the relationship had
difficulties before diagnosis.
Some partners will not see themselves as a carer, but as a partner first,
who will do what is required to support the other person. Others may
be unwilling to provide care. Either way, a carer’s assessment may
help them to access appropriate support. If one person becomes the
primary carer, this may strengthen the relationship, or cause stress as
roles shift and change.
Caring and MND - Support for you
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Sex and intimacy
MND does not directly affect sexual function, but emotional reactions
to MND and disability can affect intimate relationships and the
physical ability to have sex. The sense of touch is not lost, but limited
mobility may affect sexual activity.
Emotional reactions to MND, anxiety, fear, depression and fatigue,
along with some medications, can all reduce arousal and interest in
sex. Awareness of changes to their body may affect the person’s self
esteem. If one partner becomes the main carer, it may be difficult for
them to shift from providing intimate personal care to being intimate
with their partner.
Depending on the relationship the person with MND has with their
partner, the sexual side of their relationship may become more or less
important. Encourage open communication – with each other, but
also allow them to discuss their concerns with you. This can help to
dissipate misunderstanding, self doubt, fear and uncertainty.
• I f communication is difficult, developing a variation of sign
language, a special code, notes or communication aids can help.
•B ody mapping or sensate focus can be helpful for some couples.
•D ifferent ways of being intimate, sexual positions, activities, sexual
aids and altering the environment may help.
• I f the couple sleep in separate beds, are there other ways they can be
physically close during the day, such as a sofa or inflatable mattress?
• I f hands or arms are affected, the partner may take the hands and
use them to stroke their own body, so that both partners can share
the warmth and intimacy of this touch.
• I f fatigue is an issue, a different time of day may be more suitable.
• I f someone has a feeding tube, taping it to the skin or wearing
tighter clothing can help hold the tube still.
•W here there are breathing problems the couple might try an
upright or semi-upright position and a position where the partner
supports their own weight. A sofa or chair may be more supportive
than a bed, or slings and other equipment may help to achieve a
more comfortable position.
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• If someone uses a ventilator, it is not harmful to have sex: they
may wear the mask, feel able to manage without it, or can have it
nearby if needed.
• It may be beneficial for the person to accept some external support
with personal care tasks, if their partner is also their main carer and
support is available. This can help maintain a sense of intimacy
between the couple.
• T he person with MND may not feel comfortable to raise these
issues with a professional, due to embarrassment or lack of
understanding that professionals can offer support regarding
sexual needs. It can be helpful to introduce these discussions
gently, for example “Some people I have worked with find it difficult
to be physically close to their partner. Is this something you would like
to discuss?”
Information sheet 13A - Sex and relationships for people with MND
Information sheet 13B - Sex and relationships for partners of people
with MND
Bereavement
Those close to the person with MND should have the opportunity
to access bereavement support before and after the person dies.
Occupational therapists should consider and carry out equipment
collection in the most efficient but sensitive way.
It is important to be aware of bereavement support in your local area,
and refer people when needed. Some local hospices can provide
support to bereaved families. The GP may also be able to support the
person to access appropriate sources of support.
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Information for you
A professionals’ guide to end of life care in MND
Our bereavement webpages at:
www.mndassociation.org/bereavement
Our online forum includes a discussion board about bereavement:
https://forum.mndassociation.org
Finding your way with bereavement – This booklet includes
information about grief and emotions, accessing support and the
practical things that need to be done when someone dies.
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Funding and finances
Funding for equipment and adaptations
Consideration of potential funding routes ahead of time is a crucial
part of anticipating need. Statutory service provision should be
considered in the first instance when recommending equipment
and adaptations.
All options for equipment and adaptations should be explored,
ensuring the person is aware of what the limitations of statutory
funding are. It is important to be clear with the person with MND,
their family and carers about what statutory services can and cannot
provide, and any potential delays.
Be creative and supportive in exploring different options for provision
and finding solutions to identified problems. Lack of statutory
funding should not prevent assessment for potential problem-solving
equipment. This approach enables the person to make an informed
choice about the type of equipment that would provide the assistance
required or resolve specific problems even if this requires private or
external funding.
Disabled Facilities Grants (DFG)

A DFG can be applied for to fund any major adaptations that help the
person with MND continue to live in their own home. Eligibility for a
DFG varies depending on where the person with MND lives.
This may include provision of:
• a stair lift
•w idening doors and installing ramps
• a wash and dry toilet
• a through-floor lift
• a hoist system
•m inor adaptations including items such as adapting heating or
lighting controls to make them easier to use
•m ajor structural adaptations such as an extension, downstairs
bathroom or wet room conversion or ramps.
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Most types of installed equipment can be included in a DFG, but the
work can take months to be approved and completed. With MND,
this could mean the equipment is no longer suitable by the time it is
installed. It is important to consider whether a DFG is, therefore, the
only possible funding route.
Funding for adaptations via a DFG can take some time to be put in
place, so it is essential that this be considered as early as possible.
It is means tested, so some people will not be eligible. Consider
eligibility at the earliest opportunity to help people plan and
seek alternative funding as required. A grant cannot be awarded
retrospectively for works already completed.
DFGs are available in England, Wales and Northern Ireland, but there
may be regional differences. There may also be some differences to
how DFGs are managed by different councils within England, Wales
and Northern Ireland. The local council or Northern Ireland Housing
Executive can offer local information.
Information sheet 10C - Disabled Facilities Grants
Self funding
Some people will be self funding, either because funding is not
available or because provision is not timely. Even if the person with
MND is not eligible for funding, information and support for arranging
adaptations should still be offered.3
It is essential to emphasise the importance of assessment before any
equipment is ordered, to avoid costly and inappropriate purchases.
In some cases it may be cheaper for someone to pay for an entire
adaptation rather than getting a DFG and paying a contribution, due
to local authority supplier contracts.
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MND Association support grants and equipment loan
Where statutory funding or provision has been explored and is not
available, or inappropriate delays are anticipated, the MND Association
may be able to provide a support grant or equipment loan.
Referrals for support grants or equipment loan need to be made by a
relevant health or social care professional.
Visit www.mndassociation.org/getting-support or call our MND
Connect helpline. See page 2 for contact details.
Remap
This national charity has volunteer inventors who make bespoke
items for people with disabilities where off the shelf equipment is not
suitable. Equipment and gadgets are designed, made and provided
free of charge. Referrals usually come directly from individuals,
occupational therapists or other health professionals. Visit
www.remap.org.uk
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Charitable funding
Funding may be available from other local or national charities. Larger
employers may have welfare funds or financial support available for
current or former employees.
Support in ongoing equipment maintenance

The person with MND, their carer and family should be trained in
how to use and maintain the equipment and should receive ongoing
support with its use.
They should also be advised on what action to take in the event
of equipment breakdown, how often and by whom servicing and
maintenance is carried out, and who has financial responsibility for this.
If a person is awarded a DFG for large equipment such as a stair lift
or hoist, they become the owner. They will then be responsible for
maintenance, repairs or removal once it is no longer needed.
Financial support
A person with MND may need information and help to access financial
support, including money management and how to access benefits
and entitlements.3 The MND Association Benefits Advice Service
provides free advice by phone and e-mail in England, Wales and
Northern Ireland. It also provides advice via web chat in England and
Wales.
Our qualified advisers will help people with MND and their carers
to identify the benefits they may be able to claim and work out the
best way of claiming them. Our advisers can also deal with complex
benefits issues and appeals against decisions.
Depending on where the person lives and their circumstances, they
may be able to arrange a home visit to help with the completion
of forms.
Visit www.mndassociation.org/benefitsadvice for further
information about our Benefits Advice Service.
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Providing evidence for benefit applications
You may be asked to provide medical evidence for an application
for benefits. The welfare benefits system is complex, but you can
help to reduce stress for people with MND by providing good quality
evidence to support a claim.
This can:
• s peed up the process of the claim, helping to ensure it is dealt with
quickly and with a greater chance of success
• r educe the potential stress of claiming benefits
•h elp avoid further medical assessment (which may be conducted
by people who have little experience or knowledge of MND) and
speeds up the process of the claim.
Healthcare professionals can help by providing detailed evidence that
focuses on how MND affects the individual, and not simply a general
description of what MND symptoms include.
Information for you

Information sheet P5 - Providing medical evidence for benefit
applications
Information sheet 10A - Benefits and entitlements
NHS Continuing Healthcare (CHC)

If the person with MND has complex, intense or unpredictable needs,
they may be eligible for NHS Continuing Healthcare (CHC). In this case,
their care package and any equipment needed would be provided
free of charge by the NHS.
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To be eligible, the person needs to be assessed by a team of
healthcare professionals to determine whether their primary need is
health-related.
Occupational therapists can complete an initial checklist which
determines whether someone should have a full assessment.
The checklist and guidance documents are available from www.
gov.uk/government/publications/national-framework-for-nhs-
continuing-healthcare-and-nhs-funded-nursing-care
NHS Continuing Healthcare works in a similar way in England and
Wales. In Northern Ireland there is no guidance or framework for NHS
funded healthcare, but Health and Social Care Trusts are encouraged
to refer to the guidance used in the rest of the UK.
Information for you

Information sheet P7 - CHC for MND
Information sheet 10D - NHS Continuing Healthcare
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Palliative care
People with MND have complex care and support needs, particularly
in the final stages of life. Because MND can be rapidly progressive,
and there is the possibility of a person experiencing communication
problems or cognitive change, it is important that people with the
condition are offered referral to specialist palliative care services as
early as possible.
There is a delicate balance between ensuring decisions are made
about a person’s future care in a timely manner, and being respectful
of what the person is psychologically and emotionally ready to
discuss. Bear in mind that these conversations will be more difficult if
the person has communication problems or cognitive impairment.
Early links with palliative care and specialist services can provide a useful
source of support. However, introducing palliative care may present
difficulties, due to stigma around what it is and what it provides. It is
important to ensure conversations are handled with sensitivity.
81
It may help to introduce the service via day care, complementary
therapies or respite. Services operate differently geographically - in
some areas, people with MND are supported by palliative care teams
from the point of diagnosis. In other areas, neurology teams will offer
support to the person until the disease has progressed to a certain
point, at which time they will be referred to palliative care services.
Further information for you

A professional’s guide to end of life care in MND
Information to share with people affected by MND
Information sheet 3D - Hospice and palliative care
End of life: a guide for people with MND
Spiritual support
It is important to recognise the spiritual needs or beliefs of people
affected by MND, and give them the opportunity to discuss these if
they wish to. Spiritual care is not always religious and may be provided
by a chaplain or dedicated spiritual care provider or community
leader, counsellor, psychologist or therapist.
Advance care planning

People with MND need to be able to exercise choice and control about
their care. They should be encouraged to talk through options for their
future care needs and their preferences for end of life. Conversations
may be more difficult if the person’s speech becomes affected, or if
they experience cognitive impairment.
When decisions about future care needs and end of life are made,
they should be clearly documented, ideally in a personalised advance
care plan, and communicated to relevant health and social care
professionals. Having time to think things through and knowing
that their wishes have been recorded may give peace of mind to the
person with MND and their family.
82
It is no single profession’s responsibility to have these conversations.
Occupational therapists may be involved if they are best placed to do
so, or if the person with MND raises the subject. Consider the following
when planning future care and end of life care and support:
Advance statement
This is a written statement of the person’s preferences, wishes,
beliefs and values for future management, medical choices and care,
including preferred place of care and death. They may be included
in an advance care plan or they can stand alone. Advance care plans
and statements are not legally binding, but support health teams to
understand the person’s choices and preferences.
Advance Decision to Refuse Treatment (ADRT)

This is a written instruction to refuse or withdraw specific treatments,
including life-sustaining treatment, under precise circumstances in the
future. In England and Wales, this is a legally binding document, as long
as it has been completed correctly. In Northern Ireland it is not legally
binding, but can be used to guide health and social care professionals.
Information sheet 14A - Advance decision to refuse treatment (ADRT)
Do Not Attempt Cardiopulmonary Resuscitation

(DNACPR)
Someone with MND may choose to have a DNACPR. This will be
respected in most instances, but is not legally binding. In England and
Wales, refusal of CPR may be included on an ADRT, in which instance
it becomes legally binding, with clear instructions about when this
should be applied.
83
Reviewing decisions
Any advance decisions made should be regularly reviewed. If changes
are made, new copies of each document should be signed, dated and
distributed to those holding the existing paperwork.
Making a will
The person may wish to make a will to leave instructions about what
will happen to their finances, property and possessions after they
die. Signpost them to www.gov.uk/make-will or their local Citizen’s
Advice.
When the person dies

Families affected by MND sometimes report a feeling of abandonment
when the person they love dies. Frequent visits and support from
professionals ends abruptly, and they may feel isolated. Where
possible, occupational therapists can support families at this stage by:
• s ignposting to bereavement support and counselling
•p roviding the family with bereavement visits
• c oordinating the collection of equipment sensitively, with
appropriate timing according to the family’s wishes.
84
Looking after yourself
Occupational therapists play a vital role in improving the quality of life
for people with MND, but the certain outcome can be distressing for
all involved in the care of a person with the disease.
MND can provide a significant emotional challenge to professionals,
in terms of its often short prognosis, the rapid progression towards
disability and impending death, the limitations of available treatments
and interventions, and any pressure you may feel to remain positive
and convey hope.31
Occupational therapists work intensively with people experiencing
challenging physical, mental, emotional and social problems and may
experience stress and emotional exhaustion as a result. It is important
to address these difficulties to maintain a good standard of practice,
avoid burning out and keep yourself well.
When a person you have been supporting dies, you may experience
grief and sadness, or difficulty letting go of the friendship and rapport
you had developed.
You may become preoccupied with thoughts of what you could
have done differently. The death may also bring back distressing
experiences of your personal losses and cause you to focus on your
own mortality. These feelings can leave you feeling emotionally
drained.33
Some professionals may experience what is known as compassion
fatigue, where ongoing stress can lead to a pronounced change in
the professional’s ability to feel empathy for the people they are
supporting.35
Suggestions for self care36

Recognition of stress
It is important to regularly monitor yourself for signs and symptoms
of stress, such as feeling overwhelmed, frustrated, exhausted and loss
of energy and enthusiasm. Being aware can help you to address stress
earlier and avoid it escalating.
85
Debriefing
Talking about the emotional challenges of your role can help you to
cope more effectively. Seek support where you can. This could be in
the form of regular supervision with your line manager, during team
meetings, or more informally with a trusted colleague.33 Support from
the wider team who were involved in the person’s care can also be
helpful. You can also call our MND Connect helpline on 0808 802 6262.
Self care
It is important to take time for yourself to relieve work related
stress. This could be in the form of leisure activities for pleasure and
distraction from the pressures of work. Taking care of your physical
needs, such as eating and sleeping well, and getting some exercise
can foster your sense of wellbeing.
Managing your workload
A useful strategy is to look at your working day and ensure it is
balanced. Take regular breaks away from your work. Balance intense
or stressful tasks with simpler, more enjoyable tasks in between.
Manage your expectations
With a progressive condition like MND, the person’s functional ability
will continue to decline despite your best efforts. It may be helpful to
base your sense of personal accomplishment on the development of
your own expertise, rather than the progress of the person with MND.34
Closure
When a relationship with someone ends due to death, bringing a
sense of closure to the relationship can help you to move on. This may
be by attending a funeral where appropriate, or meeting with the
family one final time. Alternatively, it could be a private act that you
do on your own, such as lighting a candle and taking a few moments
to have a final thought about the person who has died.33
86
Useful resources
Royal College of Occupational Therapists’ Adaptations Without Delay
A guide to planning and delivering home adaptations differently.
Available at www.rcot.co.uk/adaptations-without-delay
Gold standards framework
Offer training, tools and resources to support generalist frontline staff
to provide a gold standard of care for people nearing the end of life.
Visit www.goldstandardsframework.org.uk
NICE Guideline on MND
www.nice.org.uk/NG42
Occupational Therapy and Neurological Conditions (Preston &
Edmans, 2016)
This book has been produced by members of the UK Royal College of
Occupational Therapists Specialist Section Neurological Practice.
References
1B äumer D, Talbot K and Turner MR. Advances in motor neurone disease. Journal of
the Royal Society of Medicine. 2014; 107(1):14-21.
2 T urner MR and Talbot K. Mimics and chameleons in motor neurone disease. Practical
Neurology. 2013; 13(3):153–164.
3 NICE Guideline NG42. Motor neurone disease: assessment and management. 2016.
4Y oung CA et al. Treatment for sialorrhea (excessive saliva) in people with motor
neuron disease/amyotrophic lateral sclerosis. Cochrane Database of Systematic
Reviews. 2011, Issue 5. Art. No.: CD006981. DOI: 0.1002/14651858.CD006981.pub2.
5R afiq MK et al. Respiratory management of motor neurone disease: a review of current
practice and new developments. Practical Neurology. 2012;12(3):166-76.
6G ordon PH. Amyotrophic Lateral Sclerosis: An update for 2013: Clinical Features,
Pathophysiology,Management and Therapeutic Trials. Ageing and Disease. 2013;
4(5):295-310.
7A braham A and Drory VE. Fatigue in motor neuron diseases. Neuromuscular
Disorders. 2012; 22(3):S198-202.
8A hmed A and Simmons Z. Pseudobulbar affect: prevalence and management.
Therapeutic and Clinical Risk Management. 2013; 9:483-489.
9P agnini F. Psychological wellbeing and quality of life in amyotrophic lateral sclerosis:a
review. International Journal of Psychology. 2013; 48(3):194-205.
10 Brettschneider J, Kurent J and Ludolph A. Drug therapy for pain in amyotrophic
87
lateral sclerosis or motor neuron disease. Cochrane Database of Systematic
Reviews. 2013 Jun 5;6:CD005226. doi: 10.1002/14651858. CD005226.pub3.
11 Talbot, K et al. Motor Neuron Disease: a practical manual. Oxford Care Manuals.
2010. P106.
12 Hardiman O et al. Clinical diagnosis and management of amyotrophic lateral
sclerosis. Nature Reviews Neurology 2011; 7:639–649.
13 C
ooper-Knock J, Jenkins T and Shaw PJ. Clinical and molecular aspects of motor
neurone disease. 2013.Morgan & Claypool Life Sciences. 6.
14 Wijesekera LC and Leigh PN. Amyotrophic lateral sclerosis. Orphanet Journal of
Rare Diseases. 2009; 4:3.
15 Pringle CE et al. Primary lateral sclerosis. Clinical features, neuropathology and
diagnostic criteria. Brain. 1992; 115(Pt 2):495-520.
16 Brott T, Hocking C and Paddy A. Occupational disruption: living with motor neurone
disease. British Journal of Occupational Therapy. 2007; 70(1): 24-31.
17 Foley G. Quality of Life for People with Motor Neurone Disease: a Consideration
for Occupational Therapists. British Journal of Occupational Therapy, 2004; 67
(12):551-3.
18 P ayne C et al. Interventions for fatigue and weight loss in adults with advanced
progressive illness. Cochrane Database of Systematic Reviews. 2012.
19 Lulé D et al. Quality of life in fatal disease: the flawed judgement of the social
environment. Journal of Neurology. 2013 Nov;260(11):2836-43.
20 Cedarbaum JM et al. The ALSFRS-R: a revised ALS functional rating scale that
incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III).
Journal of Neurological Science. 2009; 169(1-2):13-21.
21 T aylor B. The impact of assistive equipment on intimacy and sexual expression.
British Journal of Occupational Therapy. 2011; 74 (9):435-42.
22 Trail M et al. Wheelchair use by patients with amyotrophic lateral sclerosis: a survey
of user characteristics and selection preferences. Archives of Physical Medicine and
Rehabilitation. 2001; 82(1):98-102.
23 Rolfe J. Planning wheelchair service provision in motor neurone disease: implications
for service delivery and commissioning. The British Journal of Occupational
Therapy. 2012; 75(5). 217-222(6).
24 Rolfe J. Postural management in motor neurone disease: a guide to help maximise
comfort and function in sitting and lying. Oxford MND Care and Research Centre.
2013.
25 Nakamura R et al. Neck weakness is a potent prognostic factor in sporadic
amyotrophic lateral sclerosis patients. Journal of Neurology, Neurosurgery, and
Psychiatry. 2013; 84(12):1365-1371.
26 Gibbons C et al.. Development of a patient reported outcome measure for fatigue
in motor neurone disease: The Neurological Fatigue Index (NFI-MND). Health and
quality of life outcomes. (2011) 9. 101. 10.1186/1477-7525-9-101.
88
27 Gibbons C et al. The impact of fatigue and psychosocial variables on quality of
life for patients with motor neuron disease. Amyotrophic lateral sclerosis and
frontotemporal degeneration 14.7-8 (2013): 537-545.
28 ProGas Study Group. Gastrostomy in patients with amyotrophic lateral sclerosis
(ProGas): a prospective cohort study. Lancet Neurology. 2015; 14: 702–09.
29 Parsons KM and Schneider AJ. Clinical Considerations for Treating the Dental
Patient with ALS. Academy of Dental Therapeutics and Stomatology. 2014.
30 Hughes TA, Wiles CM. Palatal and pharyngeal reflexes in health and in motor neuron
disease. Journal of Neurology, Neurosurgery, and Psychiatry 1996;61:96–98.
31 Asher RS and Alfred T. Dental management of long-term amyotrophic lateral
sclerosis: case report. Special Care Dentistry. 1993; 13(6):241-4.
32 Carter H et al. Health professionals’ responses to multiple sclerosis and motor
neurone disease. Palliative Medicine. July 1998 vol. 12 no. 5 383-394
33 P rochnau C. Liu L. Boman J. Personal-professional connections in palliative care
occupational therapy. American Journal of Occupational Therapy. 2003; 57(2):196-
204.
34 Rogers JC et al. Burnout in occupational therapists. American Journal of
Occupational Therapy 42.12 (1988):787-792.
35 F igley CR. Compassion fatigue: Psychotherapists’ chronic lack of self care. Journal of
Clinical Psychology 58.11 (2002):1433-1441.
36 Bassett, Hazel, and Chris Lloyd. Occupational therapy in mental health: Managing
stress and burnout. British Journal of Occupational Therapy 64.8 (2001):406-411.
37 Finsterer J. Perspectives of Kennedy’s disease. Journal of the Neurological Sciences
2010;298(1-2):1-10.
Acknowledgements
Thank you to the following people for their valuable contributions
to this guide:
Barbara Strevens, Occupational Therapist
Jenny Rolfe, Occupational Therapist, Accora
Thank you to the following for contributions to earlier versions of
this guide:
Sarah Lavender, Senior Occupational Therapist, Wisdom Hospice
89
How we can support you
MND Connect
Our helpline offers help, information and support to people living with
MND, carers, family and health and social care professionals.
Email: mndconnect@mndassociation.org
Phone: 0808 802 6262
Information resources
We produce high quality information resources people living with
MND, carers, family members and health and social care professionals.
www.mndassociation.org/publications
MND Association website
We have a wide range of information to support health and social
care professionals working with people affected by MND.
www.mndassociation.org/professionals
Education
Our education programme is designed to improve standards of care
and quality of life for people living with and affected by MND.
www.mndassociation.org/education
Support grants and equipment loan
Where statutory provision is not available, we may be able to offer a
support grant or loan equipment.
www.mndassociation.org/getting-support
Research into MND
We fund and promote research that leads to new understanding and
treatment and brings us closer to a cure.
www.mndassociation.org/research
MND Register
The MND Register aims to collect detailed information about every
person with MND to detect changes in rates over time and identify
best practice to improve patient care and outcomes.
www.mndregister.ac.uk
Regional staff
We have a network of regional staff with specialist knowledge of MND.
They work closely with local statutory services and community care
providers. Contact MND Connect for further information.
Email: mndconnect@mndassociation.org
Phone: 0808 802 6262
MND care centres and networks
We fund and develop care centres and networks across England,
Wales, and Northern Ireland, which offer specialist MND care.
www.mndassociation.org/care-centres
Branches and groups
We have volunteer-led branches and groups nationwide providing
local support and practical help to people with MND and their carers.
www.mndassociation.org/branchesandgroups
Association visitors (AVs)
AVs are trained volunteers who provide one-to-one local support to
people affected by MND.
www.mndassociation.org/associationvisitors
This guide has been endorsed by the

MND Professional’s Community of practice.
We value your feedback

We would greatly appreciate your feedback on this guide. Please
visit www.smartsurvey.co.uk/s/mndprofessionals or email your
comments to infofeedback@mndassociation.org
Visit our webpages for health and social care professionals:
www.mndassociation.org/professionals
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MND Association Created 07/21
Tel: 01604 250505 Next review 07/24
Email: enquiries@mndassociation.org Version 1
Registered Charity No. 294354 © MND Association 2021

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Occupational Therapy For MND

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Occupational therapy

for motor neurone disease

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Information for you

Note: In some cases, people initially present with features of

Progressive muscular atrophy (PMA)12, 13

Progressive bulbar palsy2,11

Information for you

Selecting an appropriate assessment tool

Information for you

Use of outcome measures

The Allied Health Professions (AHP) Outcome Measures UK

NICE Quality Standard on MND (QS126)

Psychological impact of interventions

What can the occupational therapist do?

Information for you

Information for you

Specialist MND wheelchair services

Information for you

Supported positions to consider

Getting up and down the stairs

Monitoring for signs and symptoms

The MND just in case kit

Information for you

Information for you

Impact on occupational therapy interventions

Emotional lability (pseudobulbar affect)

Information for you

Occupational therapists should work closely with the speech and

Information for you

Cause of fatigue in MND

Information for you

Bathing and showering

Information for you

Anxiety and depression

Psychological impact of interventions and adaptations

Roles and relationships

Partners who become carers

Disabled Facilities Grants (DFG)

Support in ongoing equipment maintenance

Information for you

NHS Continuing Healthcare (CHC)

Information for you

Further information for you

Advance care planning

Advance Decision to Refuse Treatment (ADRT)

Do Not Attempt Cardiopulmonary Resuscitation

When the person dies

Suggestions for self care36

This guide has been endorsed by the

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