Lack of research into the importance of relationship factors for people with dementia
The National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care West (NIHR CLAHRC West) works with partner organisations, including the NHS, local authorities and universities, to conduct applied health research and implement research evidence, to improve health and healthcare across the West.
NIHR CLAHRC review finds lack of research into the importance of relationship factors for people with dementia
A review of the existing evidence into how relationships between people with dementia and their caregivers influences outcomes has found a lack of research on this topic. Our findings were published in BMJ Open.
Although all families affected by dementia need support, some seem to be better at coping than others and we don’t really understand why that is. We wanted to explore what impact the quality of the relationship with their family carers had on outcomes for people with dementia. These outcomes might include ‘challenging behaviour’, or how long the person with dementia could stay in their own home.
The NIHR CLAHRC review found 20 studies, but all of these were poorly conducted and so the results are not reliable. Many studies did not provide full details of what they found or the relationship quality factors they assessed. Also, most relationship quality aspects have only been researched once or twice and each found different results from the previous studies. This makes it very difficult to reach agreement on what kind of effect that factor really has on dementia patients.
Another problem was that when studying the effect of one factor, the studies didn’t make sure that the effects of other factors weren’t creeping in. For example, a high quality relationship was found to increase the person with dementia’s quality of life, but we can’t be sure it’s because of the quality of relationship and not some other factor, such as being younger or having a milder type of dementia than the ones they were compared to.
Although they did not find any relationship quality factor that affected chances of being put in a care home, they did see that a better quality relationship was related to delay in the worsening of patient’s dementia.
These findings don’t provide a basis on which GPs or other health professionals could reliably identify people at high risk of early care home placement, hospitalisation or low quality of life on the basis of relationship factors. But we should remember that, just because they found poor evidence about the role of relationship factors, it doesn’t mean that relationship quality is not important in dementia.
It could be that factors such as lack of emotion from the caregiver prompt ‘challenging behaviour’ in the person with dementia in an attempt to find an emotional connection. For instance, care-giver coping strategies such as constantly ‘correcting’ the person with dementia, rather than accepting their mental difficulties, could lower the self-esteem of the person with dementia.
To improve our ability to support those with dementia and their families we need higher quality research into relationship factors.
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author: Adam Smith