By Rachel Shaw, Karen West, Barbara Hagger and Carol Holland, Aston Research Centre for Healthy Ageing, Aston University
As part of the collaborative research between Aston University and ExtraCare Charitable Trust, we spoke to a number of residents in different communities about their experiences of moving into ExtraCare and about how they settled in. We spoke to six residents at length within five months of moving in and then 12 and 18 months later. Half were from Villages and half from smaller Schemes.
We wanted to speak to people in depth to get a sense of what life was like for them and how they adjusted to living in ExtraCare. We asked residents about their reasons for moving in, use of facilities, involvement in organized activities, uptake of care and support, changes since moving in, any issues related to seeking care or well-being.
We analysed each person’s stories separately to ensure we understood what mattered to them and what their subjective experience was like. We used an existential-phenomenological theory of well-being to make sense of these accounts. ‘Existential’ means a focus on what it means to be human; ‘phenomenological’ means focusing on what people’s experiences in the world mean to them.
You probably know from your own experience that human beings are naturally future oriented – this means we’re always thinking about our next day out or our next holiday. When we become ill this can be particularly challenging because it interrupts our future planning and we may not want to imagine what the future will be like.
One thing that can help us adjust to new circumstances is to make ourselves feel at home – that means being comfortable in our apartment, having our things around us, having friends we can trust and have fun with, having our physical needs met, being able to engage in the things we enjoy, and feeling happy in ourselves.
To do this we need to value the life that is possible – that means coming to terms what we have been given.
To live an authentic life, to be true to ourselves, we need to recognize that life is finite. Facing our own mortality is a significant life challenge, but grasping a sense of death allows a full appreciation of life. To do this, we need to recognize our true desires and do what makes us content to bring us peace.
Well-being can be threatened if new residents are not well integrated into the community – we heard stories of a “cantankerous old woman” and being ‘snubbed’ by clubs which upset some residents. Some residents did not want to over-commit to new relationships for fear of having to do things she didn’t enjoy. But for some, sitting and chatting to neighbours was enough social engagement to boost one’s well-being.
“Being on one level is a boon!” said one resident. Being able to move around the community with mobility aids made a huge difference. One resident described herself as “a caged bird”, set free to sing again! On moving into ExtraCare she was able to re-join favourite pastimes after having to withdraw from social circles to care for her husband.
Approaching the issue of seeking care was challenging for some. For the “caged bird”, despite having care available in-house she felt it was her duty to care for her husband. For another, knowing she would need personal care soon put her “at a crossroads”. She said she “would rather struggle on” because she wanted to retain her independence. Another resident stressed how care can free up time to engage in leisure activities that otherwise would not be possible because she’d be so worn out taking care of herself.
Coming to terms with a weaker and more vulnerable body was challenging. Getting up, washed, dressed all took longer, tiredness increased, and going out became more difficult, especially in the winter. However, some were able to adapt, be content with puzzles or reading or through vicarious enjoyment watching others enjoying themselves. For some there was a quiet acceptance of a life lived and a readiness for death: “You can’t sit looking at what might have been…sometimes I hate it, but each chapter, it’s happened…think of all that time, I’ve had all that time, a good life.”
We need to understand well-being and ageing as a mix of potentials and limitations, pleasures and sufferings, continuing vitality, competence and vulnerability. Empathic imagination – imagining what it is it like for others can help residents and staff understand each other. We need to reduce the focus on ‘being busy’ toward ‘being’ and ‘letting be’. We need to help residents see care as an optimizing strategy that will facilitate continued independence and contribute toward well-being.
A peer mentoring scheme (buddying); increased range of activities to include more informal, smaller activities; support to help residents adjust to new care needs; and introductory care packages at prices individuals can afford.
An authentic later life is possible but individuals need support to navigate their path through the existential challenge of becoming aged. As well as providing enrichment activities and healthcare, ExtraCare communities need to provide emotional support to enable individuals to become secure in themselves and to live well to the end. A research learning group has also been established with staff and a number of research recommendations are being considered. In particular:
We look forward to working together with residents and staff as we learn more about living well and living better in later life.
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