Until there's a cure ... there's care

Professor Samar Aoun

Identifying and addressing the support needs of family carers of people with motor neurone disease

By Professor Samar Aoun, Public Health Palliative Care Unit, La Trobe University, Melbourne. Perron Institute for Neurological and Translational Science, Perth.

Family carers of people with MND often describe their caring experiences as unrelenting due to the progressive nature of the disease and the hopelessness of recovery compared to cancer. Studies have reported that family carers suffer from anxiety, depression, strain, burden, fatigue, impaired quality of life and reduced social contacts. Whilst management of physical symptoms in MND is paramount, attending to such family carers’ psychosocial factors is crucial to prevent deterioration in their health and wellbeing. Most individuals with MND live at home, where their psychosocial functioning is intimately connected to the extent and quality of support they receive from family members.

Notwithstanding the physical, psychological and emotional burden of the disease on MND family carers, the Deloitte Access Economic Report (2015) has quantified the economic disadvantage on families supporting people with MND, who provide an estimated 7.5 hours of informal care per day to people with MND. The productivity loss due to such informal care in Australia was estimated to be $68.5 million in 2015, with individuals shouldering most of these costs ($44.0 million), and with government bearing the rest ($24.5 million).

This further highlights the disadvantages in all aspects that MND family carers shoulder during the disease journey. Therefore, it is imperative that MND Associations identify and address the support needs of family carers as distinct from the patients and in a consistent and systematic manner.

A pilot study, conducted in collaboration with the MND Association in WA, revealed that the top five support needs reported by family carers were: knowing what to expect in the future (83%), knowing who to contact if concerned (71%), equipment to help care (66%), dealing with your feelings and worries (58%) and having time for yourself in the day (58%).

The proposed solutions (action plan) put in place by the care advisors for “knowing what to expect in the future” consisted of discussions around end of life issues, advance health directives and future care and the role of palliative care.

For the second priority on “knowing who to contact if concerned”, discussions centred around ambulance cover, referral to palliative care services, and a contact number at night/weekend.

For the third priority on “equipment to help care for your relative”, information was provided on the Association’s equipment pool and possibility of financial help for hire of equipment if required; a bedside commode being provided to aid with deteriorating mobility; and liaison with a disability service to provide the next level of bathroom modifications.

The solutions put in place for “dealing with your feelings and worries” consisted of information on various avenues for counselling and encouragement to attend the Association’s carer luncheon for social support.

For the fifth priority on “having time for yourself in the day”, care advisors liaised with service providers to increase hours available for respite, discussed strategies for creating time for the carer, and encouraged the carer to allow more people to help with relative's care, giving carers more time for themselves.

Carers found that this approach has adequately addressed their needs in a timely manner and it gave them a sense of validation, reassurance and empowerment. Care advisors advocated this approach as an improvement to standard practice, allowing them to more clearly assess needs and offer a more structured follow-up and a focus on the carer and family.

Where to from here? There is currently planning for a national collaborative initiative to implement such a supportive model of care for family carers in all MND Associations and MND Clinics. So stay tuned! After all, until there is a cure, there is care.

A huge thank you to all the carers who completed the survey for this research project.


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