Reinvesting in life is the best prescription

Subsequent to my being diagnosed with frontotemporal younger onset dementia in 2008, at the age of 49, health care professionals and service providers all told me the same thing: to give up work, give up study and go home and live for the time I had left. On the way, it was also suggested I put my end-of-life affairs in order – even though at no time was I told dementia is a terminal illness – and to get acquainted with aged care, including selecting a respite day care and residential care facility, sooner rather than later, so I could become used to it. My husband was told he would soon have to give up work to become a full-time carer.

I quickly termed this Prescribed Disengagement™ and thankfully I eventually chose to ignore it. (Because ‘prescribed disengagement’ is a term I came up with, I was advised to trademark it before someone else did.) It seems extraordinary that one day I was studying a tertiary degree, working full-time, volunteering, raising two teenage boys and running a household with my husband and the next day, told to give up life as I knew it and to live for the time left.

All of this advice was well-meaning, but it was based on a lack of education and preconceived expectations and myths about how people can or can’t live with dementia. This sets up people with dementia to live a life without hope, without any sense of a future and destroys the notion of well-being. This Prescribed Disengagement™ sets up a chain reaction of hopelessness and terror which negatively impacts a person’s ability to be positive, resilient and proactive, ultimately affecting their well-being and quality of life.

I gave up paid employment aged 50 after my driver’s licence was revoked, however I should have been supported to continue to work. It is a legal duty to not discriminate against anyone with a disability and, until legal capacity is lost, people with dementia have exactly the same legal rights to support from an employer to remain employed. Any person who has a disability, mental health or medical condition, including cognitive impairment, which impacts on their work is eligible for services. The definition of disability is broad and is defined in the Disability Discrimination Act (1992) and does not exclude the disabilities caused by the symptoms of dementia.

However, due to the support of the disAbility (note the emphasis on ‘ability’) services at the University of South Australia, I not only continued to study, completing two tertiary degrees post-diagnosis, I went on to complete a Master of Science in Dementia Care at the University of Wollongong. Continuing to study post-diagnosis meant I had to set up and use a lot of strategies to be productive and ensure I lived a positive and meaningfully engaged life. It helped take away the focus from dementia and dying to achievement. It also increased my neuroplasticity more than games on an iPad have the potential to do, and my resilience. Thankfully, at university I was, and am, still viewed as a whole person, in the same way as any other disabled person.

What’s the cost?

The cost of this Prescribed Disengagement™ sets up people with dementia to become victims or sufferers, their partners to eventually start behaving like martyrs and to take over for the person diagnosed. It sets up people with dementia to believe there is no hope, there are no strategies to manage the symptoms of dementia, and more importantly, that it’s not worthwhile trying to find any. It negatively impacts self-esteem, a person’s finances, relationships and the ability to see any sort of positive future. Having dementia does not mean you have to give up living a pre-diagnosis life, nor living beyond your diagnosis. For some, following a diagnosis of dementia, their whole life becomes about dementia and many seem to forget to keep living the other parts of their lives. This is the negative effect of the Prescribed Disengagement™.

Prescribed Disengagement™ also takes away any power or control of the person diagnosed, giving it all to the family carers and service providers. It is unhealthy and wrong. Dementia is the only terminal illness I know of where people are told to go home and give up, rather than to fight for their lives. Prescribing disengagement also lowers a person’s own expectations about how they can live, and it lowers others’ expectation about how we can function and live, including employers, health care professionals and service providers.

For example, if I had experienced a stroke, I would have been authentically rehabilitated and supported to return to work, in whatever capacity possible. My employer would have been legally obliged to provide not only an alternative position for me if required, but to support any disabilities. For people with younger onset dementia, this is extremely important and potentially could keep us living better lives for much longer, including continued employment.

Reinvesting in life

As we move towards creating and providing dementia-friendly communities, it links in with my belief that people with dementia must stay engaged in their pre-diagnosis lives for as long as possible and, for younger people, to remain employed with assistance in the same way as any other disabled person.

This will help to remove the discrimination, stigma and isolation and will help others see that people with dementia are still very capable of contributing positively. As we have not been active in our own advocacy until recently it is not yet the norm, and this affects how people treat us. It is a very recent phenomenon that people with dementia are included in the conversations that are about them. Sadly, staying engaged means many people with dementia are accused of lying about their diagnosis. Personally I prefer to ignore these doubters and continue to strive to live well with dementia; it comes from the stigma still very present, and from ignorance. If I was doing well with cancer, no-one would doubt the diagnosis.

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. We do not have to accept the Prescribed Disengagement™ and give up our pre-diagnosis lives.

I recommend to everyone who has been diagnosed with dementia, and who has done what the doctors have prescribed, to ignore this well-meaning but negative advice and reinvest in life. I’m not talking about money, but about living well and continuing to live a pre-diagnosis life for as long as possible. Sure, get your will and other end-of-life issues sorted out because dementia is a terminal illness and one where you will most likely lose legal capacity, but there is no need not to fight to slow down the deterioration.

Models of care

The medical model of Prescribed Disengagement™ versus the disAbility or social model of authentic rehabilitation and remaining engaged in pre-diagnosis lives is worth outlining. Whilst they are not based on evidence-based practice, the following models, based on my own experience, plainly outline the differences.

Prescribed Disengagement™ supports and exacerbates ignorance, social inequality, exclusion, stigma, isolation, fear and discrimination, and dementia is the only disease I have heard of where you are told to give up rather than fight for your life. That is, quite simply, a ridiculous and negative prescription. It is time all people with dementia and their families stood up for better advice and services that enhance our quality of life and well-being.

Misguided and preconceived misconceptions about the symptoms of dementia are used to support telling us to give up living our pre-diagnosis lives. Instead, the recognition of the symptoms as disabilities would assist with a more equitable and dementia-friendly experience for the person with dementia after diagnosis. In contrast to the medical model, the disAbility model of care is positive and supports continued engagement with our pre-diagnosis lives. One of the definitions of a myth is “an unproved or false collective belief that is used to justify a social institution”. I believe it is this myth that many in the health care and aged care sectors continue to support to justify their lack of dignified person-centred care.

The value of support

At the University of South Australia, I was referred by my lecturers to the Disability Adviser and set up with a Disability Access Plan, active for the continuation and completion of my studies. This Access Plan evolved as the symptoms demanded, changing in the same way it would if I had an acquired brain injury, or a disease like multiple sclerosis where symptoms are regularly changing. I was treated as a whole person, with support for the disabilities, rather than advised to disengage and give up. Following graduation in Bachelor of Arts and then a Bachelor of Psychology, both post-diagnosis, it demonstrated that treating the symptoms of dementia as disabilities to be dealt with, rather than managing them in ways that restricted and hindered me, were vital to my general well-being, my motivation and not only my sense of meaningful engagement, but real achievement.

The other significant value of study is it is a method of neuroplasticity and brain training. If I had been referred to a brain injury unit, I would have been proactively supported to live the best life possible with whatever injury or disease I have. Suggesting disengaging from my meaningful life and taking up activities others think might sustain my brain and soul is irrational and offensive. The disability sector sees everyone as whole human beings and helps with strategies so the person can continue functioning as well as possible. The significant and positive impact of being meaningfully and positively engaged is paramount to a person’s well-being, their ability to be resilient and positive, their motivation to fight against the symptoms of dementia and their ability to better manage the emotional toll of the diagnosis.

Serious about living well

Alzheimer’s Disease International has the following charter: “I can live well with dementia”. The new group Dementia Alliance International is serious about this and aims to empower and teach people with dementia to remain engaged and to find strategies to support living well. The Scottish Dementia Working Group is serious about living well with dementia, as is The European Dementia Working Group, the Alzheimer’s Australia Dementia Advisory Committee, the Irish Dementia Working Group and the newly formed Japan Dementia Working Group. People with dementia make up the membership in all 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 others living with dementia. Alzheimer’s Australia is also serious about it, as shown by the fact, for the first time in its history, it has recently employed a person with dementia (myself) as a consultant to work on its dementia-friendly communities’ initiatives around Australia. Keeping people with younger onset dementia employed, as well as keeping all people diagnosed with dementia of any age living in their own homes until much later in the disease has the potential to save the health sector millions of dollars. It should be quite a motivator for the sector to engage in supporting change through better education of all health care professionals and raising community awareness of dementia.

Kate Swaffer is a Consultant with Alzheimer’s Australia, has just completed a Master of Science (Dementia Care) from the University of Wollongong, is Chair, Alzheimer’s Australia Dementia Advisory Committee, Co-chair, Alzheimer’s Australia Consumers Dementia Research Network and Co-founder, Dementia Alliance International. Contact Kate via her website: www.kateswaffer.com