'I know his needs better than my own' - carers' support needs when caring for a person with dementia.
Trine Holt Clemmensen, Henrik Hein Lauridsen, Karen Andersen-Ranberg and 1 others
PMID 32410395WHAT IT FOUND
Dementia carers said they often did not recognise their own support needs.
They wanted help with daily care knowledge, emotional burden, physical well-being and communication with professionals.
Key findings
01Carers and professionals identified four main areas of carers' support needs: daily life when caring, focusing on themselves, maintaining their own well-being, and communicating and interacting with surroundings.
02Carers reported difficulty recognising their own support needs, saying they knew the person with dementia's needs better than their own.
03Carers wanted easy access to practical knowledge about how to deal with dementia symptoms, and said this need continued as the disease progressed.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Most carers were female or spouses, so the findings may not represent male or non-spouse carers. Most carers cared for a person with moderate to severe dementia, so needs of carers in earlier stages may be missed. The study did not specifically include carers with a minority ethnic background, whose support needs may differ. Text cards may have guided discussion, although participants could add topics on blank cards. The study developed categories for a future instrument; it did not test an instrument or any supportive service.
The easy way to misread this
Do not read these themes as evidence that a dementia carer support instrument works. The study only described carers' and professionals' views and was part of instrument development. It did not test an instrument or any supportive service.