Living well with dementia

Following a diagnosis of dementia, most healthcare professionals and service providers prescribe giving up our pre-diagnosis life, putting end of life planning in place, and preparing for services from aged care.

I was told to ‘give up work, give up study, and to go home for the time I had left’. I quickly termed this ‘prescribed disengagement’, and I ultimately chose to ignore it.

Why is it that one day I was studying for a degree, working full time, volunteering, raising a family and running a household with my husband, and the next I was told to give it all up and start ‘living’ for the time I had left? If I had been diagnosed with cancer or any other terminal disease, I would not have been told to give up.

Prescribed disengagement  sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive. It sets up a chain reaction of hopelessness, and of learned helplessness, as our family or friends who support us are told they will have to give up their lives to ‘care’ for us, and accordingly, take over from us, which further disables us.

It is well-meaning, but based on a lack of education, misperceptions and myths about how people can live with dementia. It is based on a lack of ethical and enabling or re-abling support. It sets us up to live a life without hope or any sense of a future, and destroys our sense of wellbeing. It often also sets up the person with dementia to behave like a ‘victim’ or ‘sufferer’, and their care partner as a martyr.

Most people with dementia are so disempowered and disabled by the prescribed disengagement given at diagnosis, they start to believe they not only can’t function at all, they can’t speak up for themselves, and they don’t have the right to. This makes it easy for them to take on the persona of a ‘sufferer’, and even easier for healthcare professionals, service providers and carers to take over. It sets us up to believe there is no hope, and no strategies to fight the symptoms of dementia. It affects self-esteem, finances, relationships, and our ability to see a future, and simply ensures we become defined only by dementia.

Dementia is the only disease or condition I know of where patients are told to go home and give up, rather than to ‘fight for their lives’. To me, this is not only preposterous and negative, it is immoral and unethical.

I believe that people with dementia must stay engaged in their pre-diagnosis lives for as long as possible, and, for younger people, to remain employed whilst they can, requesting assistance and support for their disabilities as any other person who is or has become disabled. This will help others see that people with dementia are still very capable of contributing positively and living well.

My suggestion to everyone who has been diagnosed with dementia and who has been prescribed disengagement is to ignore it, and re-invest in life.

I’m talking about living better with dementia than expected, and continuing to live your 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 work hard to slow down the deterioration. Dementia may feel like a death sentence when we are first diagnosed, but we don’t have to die straight away.

People with dementia must take action and take back control over their lives and futures, or others retain the control over us.

Dementia Alliance International is making a global call to action. It is the first international group with membership which will remain exclusive to people with dementia. Please, if you have dementia, or you know someone with dementia, join this group and become part of the global voice for change. Empower yourself to speak up and join this movement, and encourage others to join with us to strengthen the power of justice and improving our basic human rights.

It is time all people with dementia and their families stood up for better advice and services that enhance wellbeing and quality of life. There is no cure for the more than 47 million people living with dementia and very little treatment, and the numbers of people being diagnosed with dementia is rising rapidly. There is a duty of care to improve the outcomes for people diagnosed now, rather than only focusing on the research for a cure.

Alzheimer’s Disease International has a Charter that says ‘I can live well with dementia’. Enabling us to live well, including ethical pathways of care and rehabilitation, and support to live our pre-diagnosis lives for as long as possible, is imperative for dementia friendly communities to become a reality.

About the author

Kate Swaffer is a retired nurse and author, speaker and advocate. Read her blog 'Creating life with words: Inspiration, love and truth' and follow her on Twitter.