The Problem of In-Home Care for People Living with Dementia

The Problem of In-Home Care for People Living with Dementia

Tima Miroschnichenko/Pexels

Source: Tima Miroschnichenko/Pexels

Home-based care for people living with dementia can present many problems. These are widely recognized as in need of long-term sustainable solutions that address families’ needs for support and assistance.

Providing responsive care services that can support keeping older people living with dementia at home for as long as possible is a big challenge for today’s healthcare policy and practice.

An almost universal policy goal, driven by economic, cultural, and social considerations, is to keep older people living with dementia at home for as long as possible.

One issue related to this challenge that we think needs further thought is the tension among the fiscal and political priorities of health and social care services, the requirements of professional care practices, and the variable, changing arrangements necessary for everyday life at home.

This means different people are involved in the issues of care at home and may think differently about what problem they are trying to address. Efforts to develop good solutions for families need to consider these different ideas about the problem.

Using Film to Learn about Caregiving Problems

To learn more about these groups’ different perspectives, we made a film from a research study undertaken with families. The film combined events and words from the research to tell a story about one family’s experiences.

We then watched the film with groups of stakeholders to see how they responded to the family’s story in the film. The three groups included 1) people living with dementia and their families, 2) front-line care providers, and 3) policymakers and researchers. Our goal was to understand how each group’s sensemaking of the film made a difference in what kind of care solutions they offered.

Cup of Couples/Pexels

Source: Cup of Couples/Pexels

Why make a film? Film is thought to be an effective way to show and sensitize people to other’s perspectives and experiences and is also an emerging strategy for sharing research study findings. We aimed to create a shared starting point to provoke dialogue and discussion.

We were interested in what a range of concerned citizens (aka stakeholders) considered to be the implications of our research findings and how they thought these might be relevant for policy and practice. We wanted to see how different groups defined the problem and what they thought should be done.

A Film That Focuses on Practices

One point to keep in mind if you watch the film is that it is not about individuals who need to change their behaviour. It is a film about the many practices between the family, home, and formal systems to create care in the community.

The film highlights problems that arise between families and formal care systems, but these rarely occur because of the problematic behaviour of individuals. Instead, we see different practices—those of families and formal care providers—driven by different concerns and ideas of what matters most.

The responses of our stakeholder groups also showed these different concerns and ideas of what mattered most.

Family Caregivers: Everyone’s Situation Is Unique

For most participants in the discussions, the film seemed to be regarded as providing information about how to approach a situation of care at home.

Family viewers empathized with the family and related to parts of the story. A family carer said, “I felt sorry for the caregiver…. That’s how I think about it now. How can I build a support system because I won’t be able to do it on my own.”

But family viewers also couldn’t think of how it could be different for the family in the film. Their inability to develop solutions suggested a lived awareness of each family’s unique situation.

Formal Caregivers: Improving Care at Home

Policymakers and researchers focused on the needs and gaps they saw in the family’s story. They focused on the caregiver’s isolation, stress, and information and the lack of skills they saw in the individual health providers, indicating that the problem was awareness and education.

The formal care provider groups were also strongly empathetic. Still, they also talked about how this family, particularly the family carer, was not doing all the “right” things and how the situation could be improved; they were interested in but also critical of the family carer, perhaps reflecting an idea that there is a “best way” to do dementia care at home. For example, one formal care provider observed that “the self-care was missing by the caregiver. She needs to be better prepared to deal with that situation.”

Interestingly, formal care providers sometimes see the problem as the caregivers, who may come from viewing the situation from a system perspective. The system was doing what it was supposed to do, more or less. Still, the family carer was not sufficiently doing her part.

One point seemed to be that you can remain organized and planful if you self-care. This made us wonder if these formal health care providers see the work of informal/family caregiving as quite similar to their own?

This would explain why they focus on planning and organizing. In their roles, formal care providers are always required to have a say in what to do or what may be done; providers use persuasive language, such as a need for self-care or the need to have a plan B, to fill these gaps.

Common Interests but Not the Same Interests in Common

Concerns were attended to differently by people in different roles. This made us wonder if the problem of care at home for people with dementia is framed and understood differently depending on your position concerning your practices—in this case, practices of caring for a person at home who lives with dementia.

We concluded that families, providers, and policymakers are related through common interests, but they do not necessarily have the same interests in common. This idea that there are differences between family and formal care providers’ care priorities is not new. Interestingly, this difference has been thought about by people who study (and work in) health and social care systems.

The assumption that everyone can have the same perspective of the problem is perhaps a weak link in current approaches to creating solutions for care at home responsive to the different stakes of the people involved. Often research on this “difference” focuses on a difference of perspectives as the problem to be solved. Providers need to increase understanding of family perspectives, or families need to be educated regarding professional ways of addressing the issues.

Is this non-congruence of interests a problem? Or are there other ways to think about it?

Diverging, Non-Congruent Interests

Isabel Stengers is a science philosopher, and her ideas about practices that have diverging, or non-congruent, interests can be helpful here. Stengers argues that if our efforts are spent trying to align or compare different practices, we risk losing sight of the nature of the practices.

So, if all our time is spent trying to get families, policy planners, and formal care providers to compromise on one solution, the nature of what is most important to these different groups can get smoothed over or lost, resulting in solutions that are less than useful or effective.

Stengers argues that taking a stance of aiming for “harmony” between practices, acknowledging each practice has its distinct interests, and recognizing the points of partial connection and the need for a sort of ‘rapport’ between them.

For care at home for people living with dementia, this means that rather than finding the ‘best’ solution for the unique perspectives of the problem, we shift our efforts to creating contexts where rapport could be built at the points of partial connection between the different practices of everyday life at home with dementia, formal care processes, and policy planning.

The nature of these contexts where rapport can be made between partial and fleeting connections is where new thinking could occur.

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