As I have a vested interest in the topic (!), I am kicking off World Alzheimer’s Month™, by focusing on women and dementia. The prevalence of women in the data is far greater both in terms of those who are diagnosed, and also those who are unpaid care partners for someone diagnosed with dementia.
Caring for others, not in the financial sense, has traditionally been a women’s role, at least in most western countries, and my father for example, still does not believe women should work outside of the home. He still believes women should not ‘work’ beyond having and raising children, cooking and managing a home for the man, and our families. Caring is what many women do, and they do it well. In my experience, I see that men do it well too.
The toll of being diagnosed with dementia is high, and the personal impact even greater, but dementia very much affects our whole families too. The physical and emotional challenges faced as a care partner are well known, but as women, I often wonder are we all doing enough to teach other women to make lifestyle changes to try to prevent it. This is especially important, if women are diagnosed at a higher rate than men, which we are.
The structure of families has changed over the years, with single sex parenting, gay couples raising children, mixed cultures living together, and the traditional ‘role’ of the women in western countries has most certainly changed significantly. Many men are home husbands, heterosexual, gay or other, and thankfully, many of us are totally happy with this equality. Just like gay marriage, a topic which quite rightfully, won’t go away until we all agree everyone is legally entitled to the same rights.
For September, and throughout #WAM2015, I am keen to publish blogs on the SAME day all around the world, so will be publishing them at 7:00pm (19:00 hours) my time to hopefully achieve this. Please, feel free to let me know if I got it wrong!!
Held in September 2015 today marks the beginning of the fourth global World Alzheimer’s MonthHeld in September 2015 this marks the fourth global World Alzheimer’s Month™, an international campaign to raise awareness and challenge stigma. , an international campaign to raise awareness and challenge stigma.
Simultaneously, Australia have kicked off their campaign in September 2015 as Dementia Awareness Month, which I will cover here in a few days.
Anyway, enough rambling, I thought I’d start off #DAM2015 with a piece I wrote that was published earlier this year (page 22) in the Alzheimer’s Disease International Report: Women and Dementia: A global research review, I wrote:
Two thirds of the five million seniors with dementia of the Alzheimer’s type are women, they are twice as likely as men to develop dementia at the same age, and women have a more severe and rapid decline than men (Szoeke, 2015). I am a woman but with a diagnosis of younger onset dementia, and although not in the senior bracket I do know the effect on women. Whilst younger women have a few unique issues such as having to care for young children, elderly parents and being employed, we still have many of the same roles as any aged woman, and experience the same grief and losses of dementia.
Many more women are living alone, and many of us would also normally be providing care for others. Dementia means this is no longer possible, and the psychological impact of our nurturing and other roles being taken away by the progression of the disease has a negative and disabling effect. The stigma, the discrimination and the characteristic isolation that a diagnosis of dementia brings with it ensures hopelessness.
The Prescribed Disengagement™ (Swaffer, 2014) still given to most people following diagnosis potentially also creates a learned helplessness and exacerbates the hopelessness; it is unhelpful and also in my opinion, unethical. The emotional devastation of such a diagnosis can be crippling and so disempowering, it is easy to give up and not to fight for our lives. With a rehabilitative and disability-enabling approach to our care, our sense of well-being and quality of life potentially is increased significantly; despite the fact these approaches are not a cure. Living better with dementia, with improved support for the assets we still have, is imperative.
Szoeke, C 2015, National Dementia Congress Presentation, http://www.slideshare.net/informaoz/dementiacongressfeb2015-szoeke
Swaffer, K 2015, Reinvesting in life is the best prescription, Australian Journal of Dementia Care, http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription