Choosing a care home for a family member living with dementia, may be the most important decision you ever make on their behalf. Of course if they have the capacity to make the decision, your role might be to support them. Either way, the more informed you are the better. The choice will have huge implications on their quality of life, and your peace of mind.
Criteria for selecting a care home
When my sister and I were looking for a care home, I researched criteria to help guide the decision. I came across Alzheimer’s Society very helpful factsheet ‘Selecting a Care Home (PDF)’.
But at such a fraught time, I’m not sure how much the information helped me prioritize the most important issues. The document has 16 pages of useful things to consider and questions to ask. It is well-grounded in knowledge of what makes a good care home: is the home light and airy? are there any unpleasant smells? is the manager friendly and welcoming? It offers some questions to test managers on their knowledge of dementia care. Though it was good on detail, it wasn’t clear to me how to hone down to the essential core elements.
Now it seems so screamingly obvious that the most important issue is the quality of care. Good quality care is ‘person-centred’ which means it starts from the standpoint of the individual and recognizes their ‘personhood’, abilities, interests, and needs, including emotional, psychological and social, as well as medical.
Person-centred care recognizes that any new or out-of-character ‘behaviours’ from the person living dementia arise from their unmet needs, and a lack of adequate care. This last point contradicts the frequently cited cause of ‘challenging behaviours’ as unavoidable symptoms of the disease. The concept of person-centred care in dementia was first developed by Tom Kitwood, in the 1990s. Although the term is commonplace now, and most care homes claim to do it, the reality often falls far short of Kitwood’s vision.
Fortunately, the staff at my mother’s home are caring, attentive and sensitive; they look after my mum as if she was part of their family. However, at some stage I may need to move her to a care home near my home. So how could I tell if a home does person-centred care?
David Sheard and his Butterflies
If you are lucky, care home management and staff may have been trained by the inspirational David Sheard, a disciple of Kitwood. His organisation, Dementia Care Matters, trains care homes and hospitals in genuinely progressive and holistic ‘person-centred care’. If a home has the Butterfly accreditation awarded by Dementia Care Matters, I would feel confident about the quality of care.
If there are no Butterfly accredited homes locally how do you know if a home does person-centred care? For starters, I would want to know how management and staff:
- identify the needs of each resident and understand what makes them tick;
- regularly engage residents proactively in relevant and meaningful, voluntary activities, that are specific to them, and preferably one-to-one;
- respond sensitively to residents’ anxieties or concerns as and when they arise, using strategies well-known in dementia care; and,
- put in place proactive strategies to eliminate or minimize recurrent painful themes.
A clue is in the answer
What a care home manager says in response to these big questions will give some indication of how the home operates. However, this is still only part of the story. There may be a yawning gap between good intentions and the actual experience for residents. Also, what a manager knows and a staff member does, may be two different things.
Observe for yourself
One way to judge is to spend time in the communal area of a prospective home and see for yourself. Try visiting at different times of the day, during an activity, a meal and when nothing particular is planned. If a care home is unwilling to let you do this, I think that may be telling.
Watch out for care staff who make basic errors when dealing with people living with dementia. This might be betrayed when they urge a resident to remember something, such as an activity earlier in the day. Sheard has a very strong term for this kind of questioning. He calls it ‘verbal abuse’, like asking someone who just lost their legs if they want to go for a run. Carers who ask such questions mean no harm: after all, prompting the memory of a forgetful relative is a common-sense response. However, it’s not the response of someone adequately trained in working with people who have dementia.
Undermining and reprimanding
You could also watch out for carers inadvertently undermining or controlling residents in ways that leave them feeling small and reprimanded. For example, if a resident with mobility issues tries to stand up repeatedly, how do staff react? We can’t rely on people with dementia to remember that they can no longer walk, or that they are at serious risk of falling. Do staff simply urge the resident to stay put with increasing insistence? Or does the carer offer to help, or attempt to engage or distract them? I suspect all care homes say they provide person-centred dementia-specific training for their staff, but how good the training is, and how well it is embedded, may be another matter.
You could also observe how staff respond to different scenarios: the woman who pleads for help to go to the bathroom; the man who repeatedly bangs the table; or another resident shouting unseen from a bedroom. Agitation can upset other residents and make them anxious too. In my view, cries for help that go unheeded or are managed insensitively are clear signs that the home really provide appropriate or adequate care.