Supporting caregivers

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This is blog number 7 in our ‘Symposium Blogathon’ – counting down to the 32^nd International Symposium on ALS/MND. Numbers in bold green type correspond to the code in the abstract book. Click on the number to be redirected to the full abstract (the page may take a minute to load).

When someone is diagnosed with MND, the changes affect not only the person with the disease but also those close to them. Becoming a carer for someone with MND can be very challenging and, over time, the level of care needed will increase – sometimes rapidly.

No-one understands the challenges of caring for someone with MND better than their caregiver, but as the care demands increase, physical and emotional stress can impact heavily on carers. Even if family and friends help, external care support is worth exploring. This may include respite care – giving the carer time to care for themselves.

Caring for carers

Informal caregivers play a key role in the care of people with MND, but research on caregiving generally focuses on the negative aspects such as stress and burden. However, consideration should also be given to the positive aspects of caregiving.

Researchers from Ireland and the Netherlands explored the self-reported burden and wellbeing experiences of informal caregivers at two leading MND centres in Europe. Both groups were predominantly female and the spouse or partner of the person with MND. Analysis identified caregiver satisfaction, ability to meet the patients needs, and the (r)evaluation of meaning and existential factors of life as positive aspects of caregiving.

The possibility of both positive and challenging experiences should be considered in the design and delivery of supportive interventions, and both burden and positive factors should be evaluated and monitored (COG-02).

A group of reserchers from Sheffield, UK explored psychological interventions that could be beneficial for informal carers of people with MND to help inform further research and service improvements. They found that most interventions were targeted towards current caregivers aged over 18 years and outcome measures generally focused on anxiety and depression.

There were some positive results for interventions that involved mindfulness and meditation, and participant feedback was positive across all intervention types. Many caregivers said they would recommend the support to others. Future research should build on these findings and find ways to increase accessibility to all carers (COG-04).

Researchers from Sheffield also looked at the needs and support preferences of informal MND carers in more detail to help inform the future development of a psychological intervention. Mood scores had previously been collected using the Telehealth in MND (TiM) system and carer experiences, challenges, unmet needs and preferences for psychological support were explored further.

Although analysis is ongoing, participants are unanimously in favour of a remote (video call) format for psychological support sessions, with a suggestion of an ‘emergency hotline’ telephone system. Feelings of concern when leaving their family member in formal care, and inadequate support from multidisciplinary team members or healthcare professionals due to lack of empathy, specialist knowledge or training were also highlighted. The outcome of this pilot study will help to inform the development of a new psychological intervention tailored to informal caregivers to people with MND (COG-09).

ALS Focus is a patient- and caregiver-led survey programme designed to measure the needs, preferences, and experiences of people with MND and their caregivers, developed by a team from the USA. ALS Focus set out to measure, across a large sample of current and past MND carergivers, which programmes and tools are critical to caregivers, their top concerns, and quality of life. In poster COG-17, they discuss their findings and the implications for how to best serve MND caregivers and ensure their wellbeing as they focus on the wellbeing of people with MND.

Dr Melinda Kavanaugh, a previous plenary speaker at the International Symposium, presents a poster (CMS-33) looking at the data from a study of children and youth carers in MND that measured sleep and wellbeing, comparing differences in these to a group of non-caregiving controls. The findings underscore the need to better document the impact of caregiving on young carers wellbeing across all areas, including sleep. The results will be discussed further in the poster.

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