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There is a tendency for professional health and social care to overpromise and underdeliver services to families engaged in home-based care for people living with dementia. We recommend a field-based approach to research highlighting family practices of everyday life to guide relevant service delivery.
Most people living with a diagnosis of dementia are living at home, participating in the care practices of everyday life with family and friends. In our research we found something that is not surprising: that every person ‘does’ dementia differently, and that each family needs to work out, in their own specific and situated ways, how to make things work, adjusting their practices of care as circumstances and needs shift.
Family strategies are those of improvisation, working to keep everyday life going from one day to the next. Formal care practices are different. These use general frameworks and trajectories built from biomedical understandings of dementia to standardise plans and programmes and in this way, to try to provide support for families – mainly with a goal of keeping family carers going for as long as possible. Sometimes formal supports and interventions help; often they don’t. These fundamental differences in the style and intention of family and formal care practices are often unrecognised.
The impetus for our research exploring this issue was a review of literature on the topic of caregiver burden, a topic widely studied by health and social care researchers and one closely associated with dementia studies. Whether explicitly or not, these two topics are often intertwined.
Our review of that literature made it clear that there are three key issues:
First, though a few early studies in the field of caregiver burden expressed an interest in developing descriptions of caregiving practices found by family members to be most helpful to them in caring for a spouse or a parent diagnosed with dementia, those descriptions never materialised.
Second, the topic of caregiver burden had evolved into studies focusing primarily on the measurement of burden carried by caregivers. Numerous surveys produce findings showing that over time, caregivers carry a large and, in many instances, growing weight of care for people living with dementia.
And this leads to the third key problem: knowing that people can carry so much weight, perhaps they can carry a bit more and for a bit longer time. In these studies, narratives of the burden of care come to be normalised in portrayals of families living in the midst of chronic illnesses such as dementia. Health and social service policies draw on those normalised understandings of what care of the person living with dementia in the community is and can be.
These findings were both perplexing and frustrating to us. Our own experiences of caring for family members with dementia told us that this picture was too narrow, suffering from a failure to characterise the complexity of everyday care practices lived as relations among people, places and things.
We developed a theoretically robust plan to conduct a field study that, relying on the recording of verbal accounts as well as detailed descriptions of everyday care practices, enabled us to present interpretations of the everyday care practices of living as a family in a community where one family member was diagnosed with dementia. Now we could ask our questions about how everyday life keeps going – and going in ways that are good and sometimes not so good.
One of the novel ways we found to share our work with others involved the production of a short film. In 23 minutes, the film told a story of what everyday life for families living with dementia was like. We showed the film to 53 people, each grouped into stakeholder groups of approximately six or eight people. The groups were caregivers, people diagnosed with dementia and an accompanying family member, frontline professional carers and a group of researchers and policy makers. We asked people, after they had viewed the film, their impressions of what they had seen.
Striking differences quickly became apparent. Family caregivers expressed their concerns for the actor representing the caregiver in the film. They described her as being in ‘an overwhelming position … like all of us here have experienced. It all seems to go back to her’. Caregivers viewing the film expressed compassion for the circumstances faced by the family in the film, and expressed some frustration with the professional care providers represented. Their frustration arose from their interpretation that the professional care providers approached this family as ‘people (who) understand the health care system and how it works … this underlying assumption is there that people know where to go and what’s available’. That is, as if both family and professional providers proceeded with the same knowledge and frames of reference.
When professional frontline care providers viewed this same film, this assumption experienced by caregivers was expressed clearly. The formal care provider stakeholders ‘read’ the reaction of the caregiver to the sudden discharge of her husband from a daycare programme as being too stressed by the event. They believed she should have had alternate plans in place to respond to this possibility. The provider group defined the caregiver portrayed in the film as lacking self-care strategies.
This reading of ‘the problem’ for the caregiver arises directly out of caregiver burden research. A narrative of resilient caregivers structuring their lives to take time to care for themselves as well as their spouse or parent is evident in caregiver burden research and has informed organisational strategies guiding professional work with family caregivers. However, encouragement to be ‘self-caring’ transforms family caregivers into an element of the formal care plan. What families were seeking instead was support to keep their lives going for as long as this could be possible.
There is a space that opens up in this almost ‘sleight of hand’ when a professional care provider directs attention towards the caregiver as a remote member of the health care team, making that person’s efforts part of the plan of care of the person living with dementia at home. The space may be apparent to a caregiver in that experience as ‘having it all go back to her’ when she does not, in fact, have access to the range and depth of health and social care resources that professional care providers can grant.
Savransky and Stengers’s ‘Relearning the art of paying attention: A conversation’, on diplomatic relations and the practices associated with respectfully recognising borders, is helpful in thinking about different ways of doing community-based care support.
The space that opens up when family caregivers are transformed into component parts of a professional care plan enacted at a distance can be taken as an instance of a failure in diplomatic relations. In contrast, Savransky and Stengers urge us ‘not to cross the boundary, not to overcome boundaries but, given the boundary, to explore what could be exchanged’.
This is the challenge that we pose to policy makers and those relying on policy to guide their professional practices in this field of dementia care. What we learned in our study of working with families as they live their everyday lives where dementia is part of that life is that ‘the practicalities of “doing dementia” need to be part of the policy story’. These practicalities can be thought of as what families have to exchange in diplomatic relations with formal care providers. If care providers take time to learn how families keep everyday life going that is often good and sometimes not so good, professional carers can learn how to support the practicalities and work in ways that respect borders between everyday life and professional care.
Christine Ceci is Associate Professor in the Faculty of Nursing at the University of Alberta, Canada.
Mary Ellen Purkis is Professor Emerita in the School of Nursing at the University of Victoria, Canada.
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