Recognising the value of informal caregivers

September 2016

Massey University’s PROFESSOR FIONA ALPASS reflects on the latest findings from the New Zealand Health, Work and Retirement Study, which reveal some of the challenges faced by informal caregivers.

 

Fiona Alpass informal caregiversApproximately 480,000 people in New Zealand are providing informal care for someone who is ill or disabled. This number has grown in line with the ageing population; however, the proportion of caregivers aged 55 years and over has increased at a faster rate than that of the general population.

Unpaid family caregiving is the mainstay of  long-term care in New Zealand and offers many benefits for the care recipient, including improved health outcomes, reduced re-hospitalisations and fewer residential care placements. There are also substantial fiscal benefits to society as a whole. A recent report estimates the annual  economic value of informal caregiving in New Zealand at between $7.3 billion (3.4 per cent of GDP) to $17.6 billion (8.1 per cent of GDP). Clearly, it would be economically unsustainable to provide this care through the public sector.

Over 90 per cent of older New Zealanders (65 years+) live in private homes. This means that many older people with disabilities and high dependency on others continue to live in the community. As such, with an ageing population, family-based in-home care for frail, ill, or disabled older people will become more common.

The Health, Work and Retirement (HWR) Study has been tracking older New Zealanders for 10 years. One of the core features of the study is following the health and wellbeing of caregivers over time. As with similar international research, we have found that women are more likely to be caregivers than men. Women tend to report a greater caregiver burden than men. This may be because female caregivers have been found to receive less informal assistance and to have more restricted social roles due to caregiving responsibilities than male caregivers.

We also found in the HWR Study that Māori were more likely to provide care than non-Māori. Māori have a higher burden of disease and disability than non-Māori, which may partially explain the higher proportion of family caregivers. However, caregiving is also a core value in Māori culture, with most older Māori remaining in family households as they age and very few residing in residential care. Given the higher rates of caregiving provided by women and Māori, it is important that formal supports be tailored not only for the particular needs of the care recipients, but also for the caregivers, with ease of access and cultural appropriateness high priorities

The HWR caregivers generally report lower mental health scores than non-caregivers, but there are few differences in physical health between these two groups. However, when looking at patterns of caregiving we found that those who cared continuously over a longer period of time had more stable levels of physical health than those who transitioned in and out of the caregiving role and those who stopped caring at some stage in that time period. It may be that those who are ‘permanent’ caregivers develop resilience and cope better over time by putting in place appropriate support networks and resources. It should also be noted that caregivers are often forced to cease caring due to their own health issues, which may explain the health trajectories for those who are no longer providing care.

One of the key issues for older caregivers in our study is the difficulties associated with combining paid work with unpaid work. A large proportion (65 per cent) of New Zealanders providing informal care are also in paid employment and as older New Zealanders are staying in work longer, many will be combining work and care as they themselves age. In the HWR Study we have found that those who combine work and care have poorer mental health than non-caring workers over time, even when taking into account sociodemographic factors. In addition, this group was more likely to report higher levels of depression and lower economic living standards.

One New Zealand study found that many carers reported being unable to continue to work at the same level, or remain in paid employment due to inflexible working arrangements and poor support services. In the HWR Study we found that around one third of carers were using sick leave, annual leave and unpaid leave to be available to their care recipients. Thus policy settings can facilitate or hinder the ability of individuals to combine work and care. The use of leave provisions by working caregivers to provide care to family members highlights the importance of flexible work arrangements
and the need for a dedicated carers’ leave policy in New Zealand – a policy that is now available in countries such as Canada, Australia and the UK.

Providing care is also associated with considerable out-of-pocket expenses for informal carers, and attempts to combine paid work and care can result in opportunity costs such as lower wages, poorer career prospects, and reduced retirement savings. The HWR Study caregivers who were better off reported more positive value and fewer negative impacts of caregiving, and a higher quality of support. Public policy that supports informal carers to cope with the burden of care should include adequate income support and financial assistance with housing, transportation, healthcare and home support services.

Although providing care is often found to be burdensome, it can also be a positive experience. Just over 40 per cent of our caregiving sample reported their lives were better for the caregiving experience. These caregivers were more likely to be male; they provided fewer care hours per week and reported being less lonely. There is some evidence to suggest that male caregivers receive more informal assistance (from friends and family) than female caregivers do and their social activites are less disrupted by the caregiving role than are those of females. This highlights the importance of helping all older caregivers to maintain their existing
social networks.

The provision of appropriate options for respite care and home support services can not only alleviate caregiver burden, but can also assist caregivers to continue to participate in social activities. These types of assistance have been shown to be related to lower levels of social and emotional isolation for caregivers. The availability of adequate training for often complex medical care and access to appropriate counselling services for carers would also assist in reducing caregiver burden. Families need access to useful information about services that are available to support them in their caring roles. These services need to be coordinated
so that ‘one-stop shops’ can make the
experience of seeking support less stressful
and more accessible.

Family caregivers provide a valuable and often unrecognised service for society. This is often at the expense of their own health and wellbeing. With an ageing population, the provision of informal care from families for the frail, disabled or ill will increase. Enhancing the health and wellbeing of caregivers will not only help individuals and families but will also benefit society.

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