MND Australia
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Psychosocial support for people with MND

This information is for health professionals and service providers.

A diagnosis of MND and the subsequent progressive loss of independence, uncertain future and changes to everyday life will have a profound impact on the person living with MND and their loved ones. 

Caring for people living with MND may also affect the psychological well-being of health professionals and service providers. 

A coordinated interdisciplinary team approach with clear mechanisms for communication will assist all team members to work together to support the emotional well-being of the person living with MND as well as each other.  

The care and management of people living with MND needs to be person centred, with attention to the emotional and psychosocial aspects of well-being of not only the person with MND but also their primary carer, family and friends.

Although there may be differences in how MND progresses, it is not uncommon for people living with motor neurone disease to become concerned about what lies ahead and how decisions about their health, lifestyle and finances will be made.  

Planning ahead provides the person with MND and their family with the opportunity to think about, discuss and set in place arrangements for health, lifestyle and financial decision-making to ensure that their needs and wishes are acknowledged and respected.

People with MND should be encouraged to talk through options and their needs and wishes for end of life care with their GP or an appropriate member of the specialist multidisciplinary team. It is important to try and introduce advance care planning discussion early on if it is expected that a person’s communication ability, cognitive status or mental capacity is likely to get worse.

Having time to think things through and knowing that wishes have been recorded in an advance care plan and that all their affairs, such as writing a will, are in order gives many people peace of mind and helps them to feel more in control and more able to focus on getting on with living. See also Accessing support and services/Financial help & support and End of life/Planning and decision making. 

Advance care directive legislation varies in each state and territory in Australia. The Advance Care Planning Australia website outlines the state and territory laws and provides information and resources to assist with preparing an advance care plan. 

The MND Associations can also provide information on advance care planning and support people living with MND and their carer with discussion and decision making. The MND Australia resource End of life care: A guide for people living with MND is available to assist people to ‘step through’ these difficult conversations and the planning ahead process. 

Health professionals and service providers involved in the care of the person with MND should be aware of any decisions that have been made and any changes made to these as the disease progresses. It is also important to stress to people living with MND and their family that decisions can be changed at any time. 

Participants across the sample felt that finding ways to reassert control into the lives of pwMND would have a positive impact on their wellbeing and quality of life. Caregivers and healthcare professionals suggested equipping pwMND and caregivers with skills and knowledge of the disease and how to best live their life with the condition, as well as encouraging and supporting autonomy and goal setting. Participants also stressed the importance of finding value in the here and now and planning for the future in order to lessen the feelings of hopelessness and regain control over the diagnosis (Weeks et al 2019).

Amyotrophic lateral sclerosis patient‐centred decision making is a demanding activity due to the character of the disease. Patient and family distress is balanced with health professionals desire to maximize patients' quality of life. This model captures these complexities and offers a framework for patients, families, health professionals, researchers and policymakers in this challenging environment. The model aims to optimize timely decision making, by promoting early and recurrent discussion of symptom markers, and time points for action within each stage of the cycle. Time constraints impact on the achievement of symptom management goals while maintaining patients' quality of life. Although the outcome of the disease is certain, patients' individual timelines and disease trajectories cannot be plotted. Health professionals strive to ensure patients reach decisions as efficiently as possible, while understanding that overwhelmed and grieving patients, and carers, cannot be rushed. The model provides a framework by which the triad of patients, carers and health professionals can enact patient‐centred care, incorporating patients' health‐care and psychosocial needs (Hogden et al 2015).

The psychological impact of MND can be huge and people living with MND will likely experience a roller coaster of emotions from diagnosis onwards. How people react to the diagnosis and adjust to changes and a limited life expectancy will depend on a variety of factors including how the diagnosis was given, how well symptoms are managed, the support network available to them and the coping strategies of the individuals' involved.

The emotional responses of carers of people living with MND will likely be similar but are often experienced at different times. A person centred approach for the person living with MND and their carer, regular review and assessment is therefore very important. 

Emotional distress undermines quality of life and well-being. Being attentive to the psychological and emotional needs of people living with MND and their support network is the responsibility of all those involved in the care of people living with MND and integral to supporting people living with MND to maintain their quality of life.

During clinic and GP visits it is important to discuss the psychological and emotional impact of MND with the person and ask whether they have any psychological or emotional support needs. It is important to offer information about sources of support such as their MND Association, online forums and support groups.

Referral for counselling or psychological review may be needed. Social workers, psychologists, counsellors, pastoral care workers or members of the palliative care team can help in providing counselling and ongoing support. 

Referral to a GP, neurologist or psychiatrist should be considered to treat depression and/or anxiety - see Cognitive change: Depression and anxiety

Emotional responses may include some or all of the following: 

Denial and anger

  • are coping mechanisms that sometimes operate alongside awareness of the condition and its implications
  • unwillingness to discuss the eventual outcome of a life limiting disease, death, is often labelled as ‘denial’, a term which not infrequently carries with it pejorative overtones
  • it is important to distinguish between individuals who do not wish to talk about impending death and those who do not wish to accept they have MND
  • both denial and anger are normal grief reactions and can be associated with a refusal to accept help or to use equipment
  • frustration felt by health professionals and carers confronted by these behaviours can be reduced by recognising and discussing the issues 

Depression

  • depression is not always easy to diagnose or differentiate from sadness and a recognition that many of life’s expectations can no longer be realised
  • may be present but can be masked by the progression of the disease and physical changes, and exacerbated by communication difficulties
  • diagnosis and treatment of depression, if present, is likely to have a positive effect on ability to cope

Anxiety and fear

  • people living with MND may be anxious about:
    • financial planning for their own and their family’s future
    • how the family will cope
    • how they will be cared for as the disease progresses
  • people living with MND may be fearful about increasing dependency, becoming a burden, suffocation, choking and isolation, fear of the dying process and fear of the unknown
    • if at all possible, provide the opportunity for fears to be expressed and openly discussed
  • allowing time and opportunities to discuss any concerns may alleviate fear and anxiety and produce practical solutions

The current study showed that people with ALS/MND utilise a wide range of coping strategies towards disease stress, but there were trends showing that certain demographics or disease characteristics were associated with the use of specific coping strategy types. Our study found that younger people with ALS/MND were more likely to use a wide range of coping strategies, including problem-focused coping, emotion-focused coping and social support coping. 

As ALS/MND is a devastating and rapidly fatal disease and people cannot change the progressive disabling nature of the disease, it is unsurprising that many studies emphasise the importance of improvement or maintenance of QOL and mental well-being. Given the importance of this aspect of care, it is essential to consider how it can be incorporated in the clinical nursing care. Nursing care for people with ALS/MND should include not only managing physical symptoms and addressing various needs but also addressing coping strategies during the disease course. In the clinical field, it is necessary to monitor and evaluate coping strategies in people with ALS/MND, as well as outcome variables such as QOL and depression (Oh et al 2021).

At present, there is a lack of knowledge about individual preferences for psychological interventions among pwMND, what factors may impede or facilitate engagement in such interventions, and how psychological interventions can be adapted to best meet the needs of pwMND. Consequently, the aim of this study was to explore the needs and preferences of pwMND with respect to psychological interventions, and how such interventions can be adapted for this population.

Data were organized into four overarching themes: (i) unfamiliar territory; (ii) a series of losses; (iii) disease variability and difficulty meeting individual needs; and (iv) informal support. Table 2 presents these themes and sub-themes with example quotes from participants. Each of the themes has implications for engagement in psychological interventions, which are presented in Table 3. Although a range of barriers to and facilitators of engagement in psychological interventions have been identified, it is evident that allowing for flexibility, tailoring interventions to the individual needs of pwMND, and encouraging autonomy are key attributes for psychological interventions with pwMND. It is important to note that a person’s preferences and needs may change throughout the progression of the disease and, therefore, it is important for psychological interventions and therapists to be flexible in order to accommodate this (Weeks et al 2019).

Amyotrophic lateral sclerosis is a fatal neurodegenerative disease with a progressive and rapid course that, so far, cannot be stopped or reversed. The psychological impact of the disease is huge, on both patients and caregivers. This review summarizes studies that have investigated quality of life, depression, anxiety, pain, spiritual and existential issues, hope, and hopelessness in the ALS field, with attention to both patients and their caregivers. Psychological support and the possible role of psychologists in the ALS field are also discussed (Pagnini 2013).

The impact of MND on expressions of intimacy and sexuality is an area not often discussed or brought up at clinic visits or by a GP. In addition there has been limited research in this area and as a result information is not widely available. This leaves the person living with MND and their carer unsure about who they can approach to discuss these issues with. 

During clinic and GP visits when discussing the psychological and emotional needs of the person living with MND and their partner it is important to also bring up the topic of the impact of MND on intimacy and sexual activity and provide opportunities for discussion. If problems or concerns are expressed then follow-up and avenues for support should be instigated. 

Overall, the summarised evidence confirms that sexuality and intimacy aspects are still important in patients with ALS and their partners, but at the same time they are affected by the disease with important impact on both QoL life and emotional well-being.

With regard to aspects affecting sexuality in patients, in addition to physical limitations (in particular weakness), emotional problems have a primary effect on sexual activities. In particular, the patients describe problems with their body changes and body image, with feelings of fear of rejection and of not satisfying the partner. No significant sexual dysfunctions directly arising from ALS were observed.

On their side, the patients’ partners are more influenced by change in the relationship where they become the carers, turning into decreased sexual interest. .....

.......These different representations of the disease between patients and caregivers may exert an effect on intimacy and sexuality aspects.

Globally, the reported results are particularly relevant according to the finding that social support and marital relationship are effective coping strategies in ALS. Therefore, such aspects should be addressed by means of specific and tailored interventions by healthcare professionals in order to improve well-being and promote more effective coping strategies within the dyads (Poletti et al 2019).

The research explored the perspectives of individuals with ALS and their treating clinicians regarding the importance of sexuality within a multidisciplinary ALS center. The findings demonstrate the need for health care professionals working in multidisciplinary ALS clinics to bring up the topic of sexual activity during clinic visits in order to address the sexual concerns among individuals with ALS, with follow-up education and recommendation as needed. 

Both individuals with ALS and health care professionals working in multidisciplinary ALS clinics highlighted that ALS may indirectly affect sexuality and resources are needed to increase knowledge and address the gaps in ALS sexual activity and sexual education interventions. Yet 75% of these clinic specialists reported having no information/strategies to provide patients regarding this matter. This can explain the lack of frequency that this topic is brought up by health care professionals in a multidisciplinary care clinic where all other patient related concerns are addressed (respiratory, mobility, speech, insurance, depression, family dynamics, end of life and so on). Our results demonstrate a need for sexuality-related topics to be discussed among individuals with ALS with either their physicians or another preferred qualified health professional (Shahbazi et al 2017).

Thematic analysis showed sexuality and intimacy to be experienced through sexual and non-sexual touch. Barriers included the failing body, an altered sense of sexual self and the intrusion of equipment. Partners' difficulty in adapting to change or their own health problems created additional barriers. Many participants found ways to adjust, and recommended that health-care professionals provide opportunities for people to discuss any concerns (Taylor 2014).

Changes to life plans, work, travel and friendships following a diagnosis of MND are an inevitable consequence of progressive loss of function, problems with speech and swallowing and/or cognitive change. This may lead to feelings of isolation and a sense of hopelessness for the person with MND and their carer.

A lack of community awareness and understanding is often reported further compounding these feeling of being alone. In addition the health professionals and service providers involved in their care may not have cared for a person with MND before and may have little or limited understanding and experience of the complex and progressing needs of people living with MND. 

Providing timely services and support to meet assessed needs and to help people maintain community and social engagement is imperative in minimising isolation. Ensuring symptoms, such as pain, are addressed in a timely manner and reassuring the person with MND and their carer that they will not be abandoned is vital in providing hope and maintaining quality of life. 

The introduction of the NDIS has provided more opportunities for people with MND aged under 65 to remain engaged with their family and friends and to continue to work, or enable their carer to continue to work, if that is what they choose to do. It has also provided more choice and control in the range and types of reasonable and necessary assistive technology and social supports available providing a sense of hope that their future needs and wishes will be met.

For people aged 65 and older access to aged care services to support home based care may be more limited. Family and friends may need to take a greater role in preventing isolation and supporting the person to remain engaged in their community.  

MND Associations provide a range of services to assist people with MND, their family and carers. Services may include MND advisor service, support coordination, peer support groups, information sessions, carer programs, home visits and access to assistive technology. For some people living with MND attending peer support groups can be daunting and confronting especially in the early days following diagnosis. Most MND Asssociations therefore provide information sessions specifically for people recently diagnosed with MND and their family and friends. 

In addition the MND Associations play a key role in providing information, education and training to health professionals and service providers and in raising awareness and understandiing of MND in the community. 

The online MND community is very active both nationally and internationally. Social media platforms can be easily accessed and allow people with MND to share their thoughts and exchange ideas with the broader community as well as with specific groups such as MND carers, children or families who have been impacted by familial MND. For people with limited movement and/or communication difficulties social media can be accessed using many of the communication devices, apps and adaptions available.  Many MND Association peer support, information and education sessions are now held online further improving accessibility.

All participants across the sample felt that there is a lack of understanding and knowledge about the disease among the general population and particularly non-MND healthcare professionals, often explaining this by describing MND as a “rare disease”. Societal awareness of MND was strongly considered to be lower than for other life limiting conditions, with cancer a common reference point. PwMND reported a tendency for comparisons to be made with Stephen Hawking, while others were acutely consciously of the stigma associated with MND, noting that friends and family were often reluctant to discuss the condition. The perceived lack of understanding about the disease was felt to compound feelings of isolation. Individuals indicated that they would value the opportunity to speak openly about living with MND with healthcare professionals who have sufficient knowledge of the illness.

Various types of support were reported, including that from peers, family members, and formal caregivers. A large number of healthcare professionals emphasized the importance of peer support from other pwMND. Professionals highlighted many benefits, including sharing experiential knowledge. Contrastingly, pwMND commented on their reluctance to engage with peers due to the fear of being confronted with the progression of MND. Nevertheless, there was agreement among the participants there was value in online peer-support groups as these would provide flexibility in attendance (as pwMND could attend online when they wanted), which would lessen the burden on caregivers.

Caregivers and healthcare professionals discussed the benefits of engaging family members or caregivers in the sessions as they would be able to help with equipment, communication and encouraging overall engagement. However, some pwMND stated that they would feel uncomfortable with family members or caregivers attending the sessions with them as they may not feel able to fully discuss their feelings and concerns for the future (Weeks et al 2019).

The role and value of peers in the current review highlighted that patients may benefit from groups. Several benefits have been noted by past literature for instance, peers can give advice on how to manage with the disability, or claim benefits or make adaptions to the home. Further to this, being able to help others can provide a sense of satisfaction and being able to relate to others can give a sense of camaraderie, finally seeing others in a worse state but managing could be inspiring. However, being able to access and benefit from the groups could be restricted by several factors including; restrictions imposed by the disease, the location of the group (requiring travel which can't be made), or that patients may not want to identify or socialize with the group. Further, patients may be negatively affected by the loss of peers after a relationship has been established.

Support services can be limited by insufficient homecare, limited access to different members of the multi-disciplinary team, lack of knowledge about MND, diagnostic delays, as well as delivery of the diagnosis. The consequences of this has been identified in previous literature, for instance late referral to palliative services may negatively impact on the patients quality of life. In a similar way the lack of awareness of specific care services can have a negative impact on the patient, for instance, within end of life care, health care professionals have identified a lack of awareness of the Preferred Priorities for Care document. Finally, again in line with the current findings, patients with MND can be dissatisfied with the tangible and informational support provided by health care professionals. However, strategies to change this have been identified in the current review (Soundy and Condon 2015).
 

MND is a life limiting disease characterised by a series of losses with the accompanying issues of grief and loss which affect the person with MND, the carer and the family from diagnosis onwards. 

It is important to establish links with palliative care at an early stage and ensure that people living with MND are clear about the role of palliative care services and the benefits that they can provide. The palliative care team can assist the person living with MND and their family to talk about their feelings of grief and loss and also provide the primary health and multidisciplinary care team with advice and support. 

Establishing links with the MND Asssociation and local palliative care services will help to ensure people living with MND have access to information and opportunities to share emotions and feelings of loss and grief with professionals who have experience of MND as well as with others in a similar situation.

The MND Australia resource End of life care: A guide for people living with MND can assist people to find out about end of life care and the services and support available. The guide also outlines services and bereavement support available to carers to support them following the death of their loved one.

It is important to continue to support carers and offer bereavement support and counselling if requested. Palliative care and the MND Associations may provide ongoing bereavement support for the carer and family following the death of their loved one. Refer also to End of life/Carer and family bereavement. 

Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful.

Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role (Aoun et al 2021).

While much discourse has tended to focus on specialist palliative care, there is a limit to the resources available for providing specialist palliative care to all life-limiting illnesses. Hence, it is important to advocate for a more realistic palliative approach to care that is more achievable from diagnosis to bereavement, through better education of all service providers, improved support for family carers, better resourcing of MND Associations and consistent anticipatory planning and bereavement support.

This person-centered approach is even more vital in a disease such as MND, where there is at present no hope for a cure yet and where looking after people’s personhood, in supporting and comforting rather than just treating, is what matters most in the relatively short span of this fatal disease. Extending the concept of person-centered care to network-focused care is vital for the identification and development of sustainable caring networks before and after bereavement, around the person with MND and their family carer(s) (Aoun 2018).

People living with MND may find themselves thinking more about spirituality and the meaning of life, especially as the disease progresses. Spirituality, its link to faith, meaning, culture and related ideas is often part of making sense of life and death.

Spirituality may relate to religious and/or non-religious values and beliefs. 

For many people their spititual beliefs are integral to their well-being and a key coping mechanism. For others it may be something they decide to explore as end of life approaches. They may seek help and guidance to meet these needs.    

Being attuned to the spiritual care needs of the family and the person with MND can help in referring them to the appropriate person or service for support. Spiritual guidance and support may be provided by:

  • palliative care services
  • hospice services 
  • hospital chaplains and spirtitial care workers
  • representatives of other beliefs (e.g those not reliogious or faith based)
  • social workers 
  • counsellors 

Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them.

The use of personal narratives by people with ALS/MND has provided a vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be underestimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team (O'Brien and Clarke 2015).

Despite its limitations, this work has provided a confirmation of the importance of existential and spiritual issues in ALS patient-caregiver couples. In particular, we found that caregivers’ well-being, depression, anxiety, burden and perception of social support are related to EWB and spirituality of patients. Further investigations are required to better understand the direction of this relation and how it can be helpful in the promotion of general well-being in patients and caregivers (Pagnini 2011).

Carers 

The feelings of people with MND are often mirrored by their carers although not always at the same time. Additionally, responses may vary depending on family dynamics, history and cultural background. 

Increasing disability, communication difficulties and cognitive and behaviour changes increase the physical and emotional burden of the carer. Physical exhaustion from the caring role may be coupled with powerlessness to prevent their loved ones suffering. 

The person with MND may be acutely aware of the impact of their condition on their loved one further compounding their own distress. Health professionals and service providers, therefore, need to be attentive to the physical, psychological and spiritual well-being of the carer, and approppriate support provided or sourced. It is important to involve the carer in planning for the impact of MND on both the person living with MND and themselves from diagnosis onwards whilst being mindful of the autonomy of the person with MND.

Assessment of carer burden, coping strategies, mood and family dynamics assists in identifying carers and families in need of respite and supportive services. Care of the carer is integral to multidisciplinary and palliative care. 

MND Associations provide carer specific resources, groups and information sessions. There are also a number of carer specific resources available online - see information for people living with MND below. 

Children and family

MND forces changes in family roles and relationships and children may need specialised support and/or counselling.

Consider ways of:

  • balancing the needs of the person living with MND and other family members
  • counteracting isolation of individuals and promoting awareness of each other’s needs
  • creating opportunities for expressing negative feelings without feeling guilty
  • preventing carer and family burn out
  • addressing the differing information and support needs of the person with MND, their carer, children, family and friends 

There are many resources available to assist parents in telling their children about MND and to support children. Early referral to the palliative care team will help to ensure a family centred approach to care and support. MND Associations may also provide information, group sessions or online support for children and parents. 

The MND Australia ‘Talking with Young People about MND’ information pack is designed for parents to assist them in communicating about MND with their children.  The pack includes:

  • Talking with young people about MND: A guide for parents
  • Talking about MND for 8 to 12 year olds
  • Talking about MND for teens
  • Talking with young people about MND for schools
  • Talking about MND for young friends 

Friends 

A diagnosis of MND will also impact friends and work colleagues. They may feel helpless and find it difficult to cope with the progessive loss of function and impending death of their friend or colleague.

For people living with MND telling friends about their diagnosis can be very challenging.  

The MND Association can provide information booklets or leaflets to give to friends and work colleagues. Friends can also call the MND Info line for information and support or attend information sessions or support groups. Friends and work colleagues will often find getting involved in awareness and fundraising events assists them to feel less helpless whilst also supporting the person living with MND. Some friends may like to provide hands on help as the disease progresses and setting up a friends whatsapp group or similar can be helpful.  

The process of patient deterioration impacts greatly on family members, most often spouses/partners (hereafter referred to as carers), who are the main sources of
help and support for patients. Patients often progress to needing long-term assistance with activities of daily living (ADL) such as eating, bathing and toileting which can result in high levels of caregiver burden and a major impact on the physical health and well-being of carers.

The extent of carers’ support needs in MND in this study evidences the necessity of a separate process of assessment and support for MND carers. Carers furthermore required support to enable them to support the patient as ‘co-workers’ and direct support to look after their own health and well-being as ‘clients’. 

While there is a wide literature on carers’ needs in MND, a strength of this study is that our findings specify in detail many different types of support carers needed or found helpful from healthcare/social care professionals. ‘Pro-active’ input was identified as particularly important across many domains, that is guidance ahead of need, not just ‘reactive’ input to a problem or crisis, which resonates with findings from a meta-analysis of carers’ educational needs.Certain types of input that may be delivered directly by professionals were common across domains: particularly advice and information (ranging from very general to highly tailored); training in different care activities; or directly delivered help. Family and friends may also provide some direct help. However, some support needs may necessitate signposting and referral by healthcare/social care professionals to other support agencies. These common themes and detailed analyses of needs experienced offer practical guidance to assist practitioners in ensuring help is tailored to carers’ individual needs (Ewing et al 2020). 

The current review illustrates that care and loving interactions are especially important from family and close others for maintaining mental well-being. However, the current review supports previous literature which has identified the possibility and danger of a loss of intimacy in relationships as the disease progresses, due to role changes and dependency. Previous literature has identified that social support has a strong association with quality of life, is inversely related to a wish to die, and has an increasing importance as the disease progresses. Thus, there is real value in being able to maintain close and intimate communication with an individual's spouse and family members, because as the disease progresses these relationships, interactions and connections provide a source of hope and comfort for the patient, as well as a sense of meaning in life which likely influences the patient's mental well-being. They are so important because they can last until the patient's death providing a unique source of hope. However, past literature has suggested that patients with a younger age may find greater fluctuations in social support with disease progression (Soundy and Condon 2015).

 

 

Caring for a person living with MND and their family can be stressful and may have a significant impact on health professionals and service providers.

In addition MND frequently arouses strong emotional and ethical challenges. These include:

  • frustration with the lack of effective treatments on offer to stop or slow progression
  • differences in attitudes to issues such as disability, quality of life, voluntary assisted dying and measures taken to prolong life
  • frustration with the system in providing adequate support or solutions to problems
  • subtle cognitive changes that may impact on the individual’s ability to accept advice

Multidisciplinary teamwork is necessary to provide support and encouragement to team members. Regular case conferencing will assist with coordination and support for the team. The team will need to be mindful of feelings of grief and loss when a person dies and the potential impact of accumulated grief on an individual or the team.

The availability of professional supervision is also very important for health professionals and service providers involved in the care of people living with MND.

Although patient satisfaction with MDC services is in general high, the provision of multidisciplinary-based care to people with ALS and their families can have a significant impact on health care professionals who render and coordinate the care. Health professionals in ALS care can experience varying degrees of stress related to their clinical work, and the emotional burden encountered by health care professionals caring for people with ALS can be severe. Feelings of stress and anxiety can arise for physicians while delivering the diagnosis and prognosis, whereas withdrawal of treatments can pose ethical and psychological dilemmas for health care professionals who provide end-of-life care. 

In an Australian-based study,70% of neurologists surveyed found communicating the diagnosis of ALS “very to somewhat difficult,” whereas 43% of them found responding to patients’ and family members’ reaction to the disclosure “very to somewhat difficult.” Sixty-five percent of neurologists experienced “high to moderate” stress and anxiety during the disclosure. Physicians reported the challenges surrounding the need to be honest without taking away hope, dealing with the patient’s emotional reaction to the diagnosis, and judging the optimal amount of time to deliver the diagnosis. The reasons for experiencing these difficulties included the lack of effective treatments in ALS, fear of causing distress to patients, and fear of not having all the answers for patients (Hogden et al 2017).

Shoesmith et al 2021Canadian best practice recommendations for the management of amyotrophic lateral sclerosis -  See table 1: palliative care and caregivers recommendations

National Institute for Health and Clinical Excellence (2016) NICE Guideline: Motor Neurone Disease Assessment and Management – see recommendation:
1.6 Psychological and social care support

Andersen et al 2012EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an EFNS task force - ALS caregivers and burden of care recommendations:

  1. Caregivers should be acknowledged in their double role in the disease process: they are the most important resource for the patient, yet they are affected themselves, and their own needs as carers need to be addressed (GCPP).
  2. Ideally, caregivers should be involved from the time of diagnosis, whilst preserving patients’ autonomy (GCPP).
  3. Carers’ own health needs should be considered. Physical, psychological and spiritual support should be provided when needed (GCPP).
  4. Maintaining communication between patients and caregivers is important (GCPP).
  5. The likelihood of a peaceful death process should be communicated to patients and their caregivers/relatives (GCPP).
  6. Bereavement counselling and support should be offered to all caregivers (GCPP)

MND Aware e-training program - MND Hub – online training course for health professionals and service providers developed by MND NSW – Session 24: Psychosocial and spiritual, Session 25: Carer wellbeing and support, Session 26: Children and families 

Carer support needs asessment tool (CSNAT) - available online

International Alliance of ALS/MND Association, Children, Youth and ALS/MND webinar with Melinda Kavanaugh, Marcela Santos, Laura Willix 

International Alliance of ALS/MND Association, 18th Allied Professionals Forum 2020:

  1. A proposed model of psychological care for patients with MND, Sian Hocking & Ruth Glew 
  2. Working with patients with MND and their families, Diane Aldridge
  3. Anxiety shows a higher prognostic role in Amyotrophic Lateral Sclerosis than depression, Umberto Manera
  4. Development of ‘Coping And Living well with MND’ (CALM), Cathryn Pinto
  5. Individual Quality of Life among spousal ALS patient caregiver dyads, Miriam Galvin
  6. Panel Discussion: Family Caregiving - Consider the Children, Jodi O Donnell Ames,  Anna Kent & Melinda Kavanagh

International Alliance of ALS/MND Association, 17th Allied Professionals Forum 2019, Perth:

  1. An Elephant in the Room (sex and intimacy)?, Lois Quick

MND NSW, Special Interest Group (SIG) Workshop 2019:

  1. Compassionate Communities, Marika Konetllis and Stephen Ginsborg
  2. Palliative care in the multidisciplinary MND Clinic, Nina Vogel

International Alliance of ALS/MND Association, 16th Allied Professionals Forum 2018:

  1. A time to remember' A practical framework to support families who have been bereaved, Wendy Bennett 
  2. What do children need when a parent has ALS/MND?, Rachel Tams 
  3. 'Breaking the conspiracy of silence: How to discuss sexuality/intimacy with patients & their partners, Sandra de Moree

Resources to download:

MND Australia 2021, End of life of life care: a guide for people living with MND 

MND Australia, Motor Neurone Disease: More Facts - for people living with MND

MND Australia, Talking about MND series for children, teens, young friends, teachers and parents  

MND Australia Fact Sheet series for people living with MND:

Planning Ahead 

Physical activity and MND

Pages on this website:

End of life - see information for people living with MND

State MND Association services 

MND Clinics 

Support for carers, family and friends 

How can health professionals help?
Talking about end of life and planning ahead 

MND Australia blog: How to make planning ahead easier with our guide to end of life care 

Other resources: 

MND Decision tools website 

CarerHelp - a website to support carers caring for a loved one who is dying  

MND Association of England, Wales and Northern Ireland:

MND Buddies - books for for children aged 4 to 10

Information resources - Young people aged 11 to 18 

Information resources - for parents and guardians 

ALS Association - At school: A guide to supporting students who have been affected by ALS, Melinda Kavanaugh 

MND NSW, Ask the Experts 2019:

  1. Advance Care Planning, Colleen Cartwright

Health Talk -  healthtalk.org - stories collected by academic researchers who interview people in their own homes, using their own words: 

  1. Emotional lability, depression and low mood in MND
  2. Relationships and sex with MND
  3. Philosophy, attitude to life and messages to others with MND
  4. Support groups and meeting others with MND
  5. Hospices, respite for MND and thoughts about future care
  6. Thoughts about death, dying and bereavement