Dignity and respect are much used words in dementia care. Understanding what they mean is very important – and made more difficult by the fact that, as this disease progresses, the definitions change slightly…
Shirley was my mother. She was diagnosed with vascular dementia over 10 years before her death. Initially she managed very well with us all supporting her, providing a guiding hand when she got muddled, then helping her stay connected with us all, extended family and friends. Finally her cognition was affected to such an extent that she could no longer read her favourite magazine, watch TV, or join in the banter that she had always enjoyed. Throughout it all, however, the essence of Shirley was always there, though sometimes you had to look hard to see it.
Shirley’s Five most important things:
- Hobbies & relationships: People with dementia still want to enjoy the things that they’ve always enjoyed. You can make them feel happy by helping to find a way to exercise, read, go outside, or visit friends. Encourage people to visit. Even if your loved one forgets visitors have been, the visit itself will leave feelings that will keep them content.
- I am not a child: Dementia does not lead to an automatic love of Bingo, colouring books or toys. Do not infantilise people because of the disease. Therapies work for individuals; watch and listen to see if they are relevant to the person you are caring for. Chances are, if they weren’t interested in board games or jigsaws before dementia, they won’t be now!
- Purpose & praise: Find things to do that have a purpose and give lots of praise. Gardening, dusting, hoovering, sorting the washing, hanging out the washing. Shirley used to love to do the ironing; it frighten me to death but she felt that she was helping me and that made her feel useful. As her dementia progressed I used to quickly remove all the delicate or complicated items from the basket – but we kept the activity going for as long as we could.
- Looking as I should: Remember that your loved one is still the person you’ve always known. You can make them happy by ensuring that they are dressed and cared for in a way that you would expect them to do themselves. Coordinate clothes, chose outfits that are comfortable, have their hair dressed and look after finger nails and feet. Everyone feels better about themselves when properly groomed.
- Talking and listening! Using prompts such as conversation cards, photos, newspapers, or outings, talk to people with dementia normally , even if the response is just a smile. When language had completely disappeared Shirley still understood the conversations around her. Once, for example, when in hospital after a fall, a doctor asked me if I thought Shirley would object to him examining her, I replied that I had no idea how she might react, but that as he was a guy she probably wouldn’t object as she liked men…To our mutual amusement, Shirley opened her eyes and laughed, enjoying the joke at her expense, even under those circumstances.