Experiences of oldest-old caregivers at end of life

Free image courtesy of Unsplash.com

Tessa Morgan writes about the new paper she has published as part of her PhD with co-authors Aamena Bharmal, Robbie Duschinsky and Stephen Barclay.

We are all  familiar with the notion that people are living longer and requiring greater amounts of end of life care with increasingly complex conditions. Governments with cash-strapped health budgets have responded accordingly by promoting end-of-life in the community. What is often lost in this equation is that increasingly many of those family and whānau ‘caregivers’ providing the 24/7 care are older themselves, frequently with their own health and social concerns.

I conducted a mixed-method review of articles from 6 academic databases to identify and synthesise the literature concerning the experiences of caregiver’s aged 75 and over whose partner is approaching end-of-life.

From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. Surprisingly,10 studies were published in the last three years and none were published before 1993. This makes me think  that end-of-life caring amongst the very old may be a particular product of present-day conditions where people reach their end-of-life in advanced age and are expected to be cared for in the community

Three key themes emerged from this small but medium quality evidence base:

  • Embodied impact of care

There are high quality studies that link caregiving with increased rates of frailty and dementia. Further research is required to resolve current disagreement about whether end-of-life caregiving increases likelihood of mortality.

Health impacts of caregiving are found to continue even when caregiving has ceased. This indicates illness impacts the whole family, not just the person approaching their end-of-life.

  • Caregiving spouse’s conceptualisation of their role

Caregiver’s navigated their self and marriage identities in relation to their partner’s condition and expectations about gender and place. A range of qualitative evidence emphasised the importance of maintaining the household, even if this meant taking on new gendered roles (such as cleaning and cooking for men and finances for women). This appears connected to a desire to maintain a sense of biographical flow in spite of illness. Dementia was singled out as particularly.

  • Learning to care

Building on research published by the Te Arai team, evidence in this review suggests that older caregivers had to learn a range of new skills to be able to remain providing care for their partner. This included learning how to navigate bureaucracy and becoming an expert in their partner’s condition.


Areas for future research

This review resoundingly found that when aiming to support older people with end-of-life conditions it is best to ask questions rather than make assumptions about the ability or identity of ‘family caregivers’.

We identified a number of important areas for future research about this highly vulnerable group of care providers:

  • How can we include more oldest-old couples where neither identify as a ‘carer’?
  • To what extent do very old caregivers themselves have end-of-life and/or terminal conditions?
  • Is anticipatory grief is more pronounced in this group given their advanced age and often decades spent with the care recipient?
  • In what ways and situations can spousal end-of-life care be experienced as positive and even ‘life-sustaining’?
  • What kinds of theory from fields like anthropology, sociology or gender studies can we draw on to further understand the complexities of these caregiving arrangements and the societies in which they occur?

The paper can be accessed for free here: https://academic.oup.com/ageing/article/47/6/887/5079221

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