Being bold: Not giving up on dementia

Being bold: Not giving up on dementia

This International Women’s Day, women the world over are being asked to #BeBoldForChange for a more gender inclusive world. I’m going to go one bold step further, advocating for a gender and dementia inclusive world.

8 March 2017

Kate Swaffer, guest blog

You might not link the words dementia and gender. You wouldn’t be alone; of the 29 countries in the world with a national plan to tackle dementia, only 12 acknowledge what it really means for women. This is despite dementia being in the world’s top ten causes of death for women according to the World Health Organisation, and the biggest cause of death for women in the UK.

As a woman living with dementia and a past care partner and nurse of people with dementia, I write and read back these words with unease. The point of revealing the impact of dementia on women worldwide and the failure of governments to adequately respond is not to fear monger – it’s to provoke change. We desperately need a greater global understanding of what it means to be a woman affected by dementia.

I can talk about my perspective as a woman with young onset dementia, and I am lucky to have this platform, but each person’s experience of dementia is different. We are regularly defined by the symptoms of our disease—forgetful, confused, aggressive, odd behaviour, absconders, mute or refusing to communicate—rather than the people we still are—mothers, lovers, daughters, wives, employees or employers, grandmothers, aunties, friends.

For me personally, living with dementia some days is terrifying – it’s difficult and it is sad.

Conversely, there are days where I see living with dementia as one of my greatest gifts in life. Being told I have a terminal condition, and could potentially lose my cognitive capacity and most of the memories that define me has actually given me a clarity in life that I didn’t have before. But it hasn’t been easy for me, nor is it for the millions of other women that live with dementia, are carers for someone living with a dementia or that make up most of the undervalued and underpaid care workforce (where it exists) worldwide.

Within six months of diagnosis it was recommended to me that I start going to aged day care once a month to get used to it. The advice was well-meaning, but it was based on a lack of understanding and preconceived expectations and myths about how people can or can’t live with dementia. It was also based on late stage dementia, not early stage dementia. If I’d had a brain injury through a stroke or a road traffic accident would I have been told to go home and give up? No, I would have been offered rehabilitation and support to fight for my life. I term it ‘Prescribed Disengagement®’ – it takes away any power or control of the person diagnosed, giving it to or forcing it on family care partners and then health and care services; it promotes dependence, rather than independence. It is unhealthy and wrong. Prescribed Disengagement lowers a person’s own expectations about how they can live, and it lowers others’ expectations about how we can function and live, including employers, health care professionals and service providers. There remains a gross and systemic underestimation of the capacity of people with dementia.

I was studying as a mature age student at the time of my diagnosis and thankfully, at university I was, and am, still viewed as a whole person, in the same way as any other person living with disabilities. I continued to study, completing two degrees; I went on to complete a Master of Science in Dementia Care in 2014. Continuing to study post-diagnosis helped take away the focus from dementia and dying to living and meaningful achievement.

Having to give up my paid employment, because of the symptoms of dementia, was very difficult. No-one ever asked me how it felt or if I had lost the sense of who I was, no-one ever asked me about the human cost of this or any of the other losses. Some even said I was lucky to be retiring early! For many our work defines us, just as many years ago women who stayed at home and worked full-time as mothers and house keepers, felt empty when their children all left home, as if they had lost the sense of who they were. Globally, around two out of three primary dementia carers are women, and women are more likely than men to reduce their hours to part-time, or stop work completely to support someone with dementia. Wherever you go, if you meet new people, they almost always ask ‘What do you do?’ If you only do dementia, then what do you tell them, and what value is your life perceived to have? This is probably why I blog, write, speak out and advocate, not just to create my memory bank, but to make sense of dementia, and to make sure my life feels valued, so that I am doing something that is still meaningful and worthwhile to me.

To mark International Women’s Day I recently joined  a panel of leading women working to tackle the global challenge of dementia, speaking at a London event organised by the Global Alzheimer’s & Dementia Action Alliance (GADAA). GADAA is a network of international civil society organisations coordinated by Alzheimer’s Society, Alzheimer’s Disease International, Age International and Dementia Alliance International.  GADAA is launching a report that frames dementia as a global women’s health, social care and rights issue that can no longer be ignored. The GADAA report is revealing not just in its findings of discrimination faced by women affected by dementia worldwide, but in the lack of research and policies to address the issue.

Yet there is hope. In May, the World Health Assembly will decide on the adoption of a ground breaking Global Action Plan on Dementia. The plan makes recommendations, which for the first time include rehabilitation and a gender sensitive approach to support people with dementia. We must urge governments the world over to back this plan, for the sake of everyone affected by dementia.

It is only by talking about dementia and facing the global challenge head on, that we will address the many misperceptions and myths about the disease, or else the stigma, discrimination and isolation women affected by dementia face will almost certainly continue.

Kate Swaffer is an advocate, author and speaker, on dementia. Chair, CEO and Co-founder of Dementia Alliance International and a Steering Committee member of the Global Alzheimer’s & Dementia Action Alliance, Kate is also 2017 SA Australian of the Year. Kate was diagnosed with younger onset dementia in 2008, at the age of 49.

Read the GADAA report, Women & Dementia: A Global Challenge