Burned-out families: Restore care services for vulnerable elderly people now

Developing roadmaps for Covid-19 was hot on the political agenda during the early summer months. First, we had the reopening of shops, restaurants and pubs serving food, then creches, schools and universities. The more recent lockdown has been accompanied by a new roadmap and an implicit promise that if we adhere to Level 5 guidelines, many amenities will be reopened again before Christmas.

Absent from this debate is any consideration of the urgent need for the safe and timely reinstatement of Government home support services to assist frail older people to live at home with support from their family caregivers.

There is heavy reliance in Ireland on family members to provide home care supports to our old and most vulnerable.

In 2015, Care Alliance Ireland estimated that 89.5 per cent of personal care and household tasks were provided by family caregivers. Reliance on family caregivers is particularly strong since Irish people have no legislative right to home-based community care services.

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According to the 2016 Census, 195,263 people (4.1 per cent of the population) identified themselves as carers and were providing unpaid assistance to others. These family carers each provided an average of 38.7 hours of unpaid care. Women provided almost two thirds of all care hours.

One recent Irish study showed that 70 per cent of spouse carers for people with dementia had at least two chronic health problems

The family caregivers probably hardest hit by Covid-19 are those responsible for a relative with dementia, of whom there are at least 60,000 in Ireland. Most of these family caregivers want to provide care but they also want recognition from the State for the hard work they do behind closed doors.

Only a very small proportion ever receive income or service support from the State. Many are elderly and do not enjoy good health. One recent Irish study showed that 70 per cent of spouse carers for people with dementia had at least two chronic health problems, about a third had clinical depression and most had visited a health service professional in the previous month.

Some are adult-child caregivers, daughters and daughters-in-law who may never consciously have taken on the care role, but rather like the dementia itself, that role unfolded on them incrementally, while other family members exempted themselves by providing acceptable excuses. Some of these are “women in the middle”, caring at a distance, running two homes or juggling care with work and other child care commitments.

Work from home

Others are attempting to work from home while caring for a frail cognitively impaired parent living in the same household. Moving a relative into a nursing home prematurely is not desirable, especially in the current climate, with new cluster Covid-19 outbreaks and the two-week self-isolation requirement.

How long more must family caregivers wait for day care and other home care services to be safely reinstated?

For some family caregivers, day care is a lifeline service. The closure of day care centres, although understandable at the time, has had a very significant impact on family caregivers’ wellbeing. A recent survey revealed that about 14,200 Irish people attend day care centres, of whom close to 3,000 have dementia. These services were first closed in March, during which time other HSE and Alzheimer Society of Ireland (ASI) services also stopped. Their closure has caused significant deskilling and a decline in the health and wellbeing of individuals. The ASI’s own recent survey on caregiving and Covid-19 has shown that the closure of home care services has also resulted in a deterioration in carers’ own mental health.

Home care hours

The recent budget announcement of five million additional home care hours to be made available to frail older people living at home and a dedicated budget of €12.9 million to enhance dementia services is welcome. However, this funding is only a drop in the ocean, given rising prevalence rates of dementia, the heightened demand for more home care services and the urgent need for pre-existing services to be made fit for purpose in compliance with Covid-19 recommendations.

With creches, schools and universities now reopened and with plans to reopen society in early December, a key question that must be addressed immediately is, how long more must family caregivers wait for day care and other home care services to be safely reinstated?

The current debate on Covid-19 and older people in nursing homes must be broadened to include a comprehensive discussion of quality of life issues for all community-dwelling older people and the timely and safe resumption of all home care services.

The Government cannot continue to rely on the goodwill of family members, most of whom are women and many of whom are already burned out.