Their families and partners are also told they will have to give up work soon to become full time ‘carers’. Considering residential care facilities is also suggested.
All of this advice is well-meaning, but based on a lack of education, and myths about how people can live with dementia. This sets us all up to live a life without hope or any sense of a future, and destroys our sense of future well being; it can mean even the person with dementia behaves like a victim, and many times their care partner as a martyr.
Many of you know I have labelled this “Prescribed Disengagement”, and it is clear from the numbers of people with dementia who are standing up and speaking out as advocates that there is still a good life to live even after a diagnosis of dementia.
My suggestion to everyone who has been diagnosed with dementia and who has done what the doctors have prescribed, is to ignore their advice, and re-invest in life.
I’m not talking about money, but about living well and continuing to live you pre-diagnosis life for as long as possible. Sure, get your wills and other end of life issues sorted out because dementia is a terminal illness, but there is no need not to fight to slow down the deterioration.
There is no other illness I know of where the medical and health care providers tell you to give up. To me, this is a ridiculous and negative prescription… It is time all people with dementia and their families stood up for better advice and services that enhance well being.
Alzheimer’s Disease International have a Charter that says “I can live well with dementia”, and this is not a joke, it can be done. They are serious about, and I am serious about it.
The new group Dementia Alliance International is serious about it. The Scottish Dementia Working Group is serious about it. The European Dementia Working Group is serious about it. The Alzheimer’s Australia Dementia Advisory Committee is also serious about. People with dementia make up the membership of these groups.
We are all working together to support the voices of people with dementia, and to improve our own lives, and the lives of everyone around the world living with dementia.