Being bold: Living with dementia

Speakers: Professor Dawn Brooker, Association for Dementia Studies, University of Worcester; Tania Dussey-Cavassini, Swiss Federal Office of Public Health Professor; Dr Anne Margriet Pot, World Health Organisation; Faraneh Farin Kaboli, Iran Alzheimer Association; Kate Swaffer, Dementia Alliance International; Special guest and MC: Baroness Sally Greengross.

On Thursday March 2, 2017 DAI’s Chair Kate Swaffer represented DAI at an International Women’s Day event Women and Dementia: A Global Challenge, hosted by the Global Alzheimer’s and Dementia Action Alliance (GADAA) in London, following attendance at the World Dementia Council’s 10th meeting in Paris.

As the last two speakers, Faraneh Farin Kaboli from the Iran Alzheimer Association and Kate had less time than planned for their presentations due to a number of things, including the high interest in this event and global challenge, and questions following the other speakers. Kate’s prepared speech notes are being shared here, along with the slides, as the  opportunity to get all the messages across was not possible. As her presentation was less formal due to time constraints, Kate did however cover some issues not in her notes, as outlined below.

The two issues she spoke about not referred to in her notes and which are of significant importance to women and dementia, is the missing voices of the young women and children, who have taken on the care role for a parent with younger onset dementia (YOD), and the four forms of stigma attached to dementia and especially to YOD. We experience the stigma and discrimination of dementia, we experience the stigma and discrimination people with mental illness face, as many believe dementia to be a mental illness (which it is not), as women, we still face significant sexism, and then for those with YOD, we face ageism, as we have what many see as an ‘old person’s’ disease.

GADAA will endeavour to make the video recording of this event available for those of you unable to attend, to view next week.

Being bold: living with dementia

By Kate Swaffer

Slides 1 and 2
Thank you for this opportunity to discuss women and dementia, from the perspective of the lived experience, and also from the perspective of the women who are members of Dementia Alliance International, the only global advocacy group, run by and for people with dementia.

Slide 3
Dementia is the biggest health and social challenge facing the developed world, and although I could reflect on the data and the ways in which women are disproportionately affected by dementia worldwide, in the time I have that is not sensible, and our other speakers have already covered it. You can access and read a comprehensive review on the topic in the 2016 ADI report, Women And Dementia: A Global Research Review on the ADI website. Since releasing their report Dementia: A Public Health Priority, in 2012, the WHO has been working on the development of a draft global action plan on the public health response to dementia, due to be submitted at the World health Assembly in May this year for approval.

Side 4
As an example of the impact on women of dementia, in America, more than 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).

Slide 5
This study also look at the intensity of the impact on women, and noted women get far less support as care partners than men do in a similar role. I can certainly remember the fuss made over men when a mother was away from home, when my sons were at school, and the difference when it was the father who was out of town on business.

Slide 6
This graphic, from a study published in 2016 shows the relationship between males and females and possible risk factors for the development of Alzheimer disease and other dementias. Dementia risk factors, such as smoking, coronary artery disease, and brain injury with loss of consciousness, are more common among men than women. However, other risk factors, such as diabetes, obesity, and hypertension, are also more common among men, but women are disproportionately at risk for dementia when these conditions are present. Most studies of dementia examine risk by age. The longer life spans observed in women does not fully explain the sex bias for Alzheimer disease, but increases the over-all prevalence of all-cause dementia in women among the oldest old. Older age, family history of dementia, APOE-ε4 carrier status, and low education are prominent risk factors worldwide in both males and females.

Cognitive and physical functioning slowly deteriorates even without a person having a dementia in the same way our for example, our eyesight and skin change with ageing, and as we all know, dementia is not a normal part of ageing. Advanced age and our gender, two of the most prominent risk factors for dementia, are not modifiable. Lifestyle factors such as smoking, excessive alcohol use, and poor diet modulate susceptibility to dementia in both males and females, although the degree to which the resulting health conditions e.g., obesity, type 2 diabetes, and cardiovascular disease, impact dementia risk varies by sex.

Slide 7
Women as CEO’s: 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. We are most often the Chief Executive Officers of our families, and in spite of the feminist movement, women are more often the people actively doing the childcare, volunteering at school, supporting older parents, and often the ones who are cooking and managing a home for our families. Caring is what many women innately do, and they do it well. In my experience, I see that men do it well too, but it is more often the women in the family, juggling home duties, and now full time paid work as well.

But the impact of dementia on women may well be having an impact on impact on the recent gains in gender diversity in the workforce, and this is something that needs further investigation. Although women are still not treated equally to men in the same roles in the workplace, being forced to retire from work, either due to being diagnosed with dementia, or supporting someone with dementia, will impact this progress.

Dementia from the inside out

Slide 8
I am a woman with a diagnosis of younger onset dementia, and although not in the senior bracket I do know the various effects on women, as I’ve also been a family care partner to three people who have died from dementia. This has impacted my many roles, my self-identity, especially my role as a mother and a wife, in the way I would like to be, and my self esteem and overall emotional wellbeing. Dementia also ensured I lost my job, due to the loss of a driving license, which at the time, no one advised me of my rights as a person with disabilities caused by the symptoms of my particular dementia, to remain employed.

As a woman, the thought of not being able to fulfill what I believed was my role as a wife and mother, and especially my ‘duty’ as a mother, was devastating. The thought I would not remember them one day was and still is devastating. Whilst I can at least for now, rationalize that it is not my fault, I feel like I am failing my children, and failing my husband. They have never said this although I can occasionally see the stresses due to the changes are taking on them.

And for women (or men) with dementia living alone without a partner, they may become even more isolated after dementia, missing out on the emotional and physical support of a live in partner or Back Up Brain BUB. Whilst there will be many challenges ahead for us both, I feel very lucky to have a husband and two amazing sons to support me, but the emotional impact on them, mostly not talked about, is significant.

The impact of not being able to ‘care’ for my husband and children, or older parents, in the same way I have before dementia, is significant. And the feelings of being a ‘burden’, and of guilt are never far from my reality. Not to be able to ‘provide/ that same support, and then, to become the one needing support at such a young age, was and still is very difficult for someone who has been fiercely independent, and as well, who has always wanted to, and been the mother and wife ‘caring’ for them.

Loss of identity, loss of self, loss of feeling like I am no longer a ‘good’ wife or mother… these thoughts appear often, and never quite to go away.

Whilst younger women diagnosed with dementia, or with a parent with dementia 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 most woman, and experience the same grief and losses of dementia, or if a care partner, the perceived losses of the relationships we had with our family member with dementia.

The human cost of being diagnosed with dementia is high not only to the person diagnosed, but our families. The physical and emotional challenges faced as a care partner are well known, but, I worry we are not doing enough to teach and empower women to make lifestyle changes aligned to the risk reduction evidence to reduce the risk of getting dementia, especially as the data clearly tells us we are at a higher risk.

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 househusbands, heterosexual, gay or other, and many of us are very comfortable with this emerging change in family structures and equality.

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 ensure 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, unethical and promotes dependence. 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, along with our independence, despite the fact these approaches are not a cure. Living better with dementia, with improved support for the assets we still have, rather than the focus remaining on our deficits, is imperative.

Perhaps the biggest challenge in tackling the issue from a gender perspective is the stigma, discrimination, and the many myths and misperceptions about dementia. For example, those if us choosing to live well with dementia more publicly, with disability support for disabilities that to most, are invisible, are too often being accused of not having dementia, or lying about it, and this has become systemic, and could even be seen as a for of bullying. We need more education, of not only doctors, nurses and paid carers, but of our community and families.

Judy from Australia who has been living alone and beyond a diagnosis of dementia in her own home, for over ten years, and recently said of her experience of being accused of not having dementia;

A “close friend” challenged me recently when I explained that I just could not travel overseas, with the words “Anyway, you don’t have Alzheimer’s”, and each time when I tried to respond, kept hammering at me, repeating, “You do not. You do not!” Then with a voice of ultimate authority “Anyway, others agree with me!” implying that friends we have in common see me to be a fake, a pretender, a liar, whatever.

 I felt terribly assaulted, as though I’d been stabbed, again and again – and by one of my closest friends?

I was in shock, asking myself -“Why would anyone ever do this to themselves. A life sentence! Losing so much of one’s quality of life – one’s mind? All the books you can no longer read, and so much more, and still trying to be “normal”. It was, and still is, just devastating to feel betrayed, by someone so close to you.”

This habit, based on myths and preconceptions that everyone with dementia must look and act as though they already in the late stage of the disease, needs to stop. It could also be seen as a disability hate crime. There are many people who have been medically diagnosed with dementia now in the public eye, as speakers, authors and advocates, who may not look like they have dementia. In reality, not all the doctors around the world can be wrong. To assume otherwise is offensive, not only to the person diagnosed, to their families and to their medical doctors. It is harmful, hurtful and wrong for anyone without dementia to accuse someone living with this chronic progressive terminal illness, that, when diagnosed early enough, may have mostly invisible disabilities.

The impact of dementia on women is high

Slide 9
It is very clear from the data, my personal experience, and that of DAI members and others, that;

  • Women are at a greater risk of developing dementia
  • Women are more often in unpaid care partner roles than men
  • Women are usually the CEO’s of the household in a heterosexual relationship, or are living alone
  • Women are more likely to give up work to support a family member
  • Women are often isolated in their role as care partners
  • Women diagnosed with dementia are deeply impacted and isolated
  • As a result, women are more often negatively affected financially, emotionally and physically than men, simply due to the percentages of women affected by dementia
  • This is not meant to dilute the human cost felt by men, either diagnosed with dementia or supporting someone with dementia

Dementia Alliance International

Slide 10
Through self-advocacy and then global advocacy across my roles in Dementia Alliance International, I have retained a sense of truly meaningful purpose, and the focus has been on my abilities and disability support, rather than on my cognitive deficits. It is also clear I could have remained in paid employment for much longer with reasonable adjustments.

DAI’s members are predominantly women, many with younger onset dementia, and the impact of dementia is significant. However, as we empower each other to take back control of our lives, and to be bolder by striving to live well with dementia, the impact of the human cost of dementia is slowly changing. We need more self advocates and local, national or global advocates, both men and women, as this re empowers us to live well with dementia, rather than to simply go home and prepare to die from it.

Slide 11
DAI: What we aim to do is empower everyone with dementia to reclaim their pre diagnosis lives, and to strive to reduce the negative impacts of dementia through self-advocacy and online support, with support groups, webinars and cafes.

Slide 12
To reduce the human cost and the economic cost of dementia, it is clear we need to manage the symptoms of dementia as disabilities, and affording people with dementia the very same rights as everyone else under the Conventions of the Rights of Persons with Disabilities.

A global perspective

Slide 13
From a global perspective, I feel civil society needs to support action on dementia from a gender perspective, by ensuring more longitudinal research is done on it, and that all national dementia plans include gender as part of their remit. Of the 29 countries in the world with a national plan to tackle the disease, only 12 offer gender-sensitive responses. There is also no systematic data collection to disaggregate the prevalence, diagnosis rates or impact of dementia on women.

A Lancet Neurology paper reported that adoption of the following known to be associated with dementia may well “halve the cases of dementia and are some things we can all do and there are many studies and organisations such as the Alzheimer’s Society UK, Alzheimer’s Australia and others also support and promote these as risk reduction factors;

  • Healthy diet, including reducing alcohol or other social drugs
  • Quit smoking
  • Physical activity
  • Healthy weight
  • Keeping a good check on your blood pressure, cholesterol and blood sugar
  • Keep your brain active

The World Dementia Council has also made risk reduction, and research for improving care for those diagnosed and those supporting us priorities in their work, alongside research for a cure and disease modifying drugs and open data. They also have a included a focus on topics such as women and dementia, and stigma. Professor Dale Bredesen’s novel research indicates these factors may also be significant in reducing the progression, or even reversing cognitive decline, in patients with MBI, MCI or early dementia.

The Global Alzheimer’s and Dementia Action Alliance, of whom I also represent today in my role as Chair and CEO of Dementia Alliance International, one of four organisations on their Steering Committee, I can report that GADAA concludes the following recommendations.

Recommendations made by GADAA, included in the full report to be released next week. 

Slide 14

Recommendations to Civil Society Organisations must include

  • International civil society involved in women’s health and equality work should incorporate the disproportionate impact that dementia and associated caring role has on women into policy and programming.
  • A broad-spectrum of iNGOs should support efforts to raise awareness of dementia as a global health priority and tackle stigma associated with the condition which can especially affect women.
  • Gender-focused iNGOs should engage with civil society groups working on dementia to ensure that dementia’s disproportionate effect on women is recognised and responded to throughout their policy and programming.
  • Dementia-focused civil society must ensure gender-perspectives are researched, discussed and acted on at every level of their influencing.

Slide 15
Recommendations to International, Regional and National Policy-makers:

  • A gender-perspective should be included in all dementia policies and plans, with sufficient resource allocation to ensure their implementation.
  • Women, including those living with dementia, should be fairly represented at all stages of developing health and social care policies related to dementia.
  • Women, whether living with dementia or as unpaid care partners, should have access to post-diagnostic support and benefit from social security programmes, especially in rural areas
  • Special attention needs to be given to supporting women with dementia that live alone. The WHO secretariat should monitor the impact on women of the Global Plan of Action on the Public Health Response to Dementia’s implementation.
  • Countries, regional bodies and international bodies should collaborate to share best practice and develop comprehensive gender-responses to dementia.

Finally…

Slide 16
Let’s for one final moment, be reminded of the conclusion reached by the Organisation for Economic Cooperation and Development (2015) after an exhaustive data-based study of the world’s 38 richest countries is that;

‘Dementia receives the worst care in the developed world’.

This is truly extraordinary, and shocking, considering this was 67 years after the Universal Declaration of Human Rights (United Nations, 1948) was adopted. This Convention was meant to protect every citizen in the world, including people with dementia who live with disabilities due to their diagnosis of dementia. It is clear though, that people with dementia are still missing optimal support and care, even in the developed countries. As women are more affected than men by dementia, it is also an issue we must tackle as women, collectively, to ensure change.

Detection of dementia is essential for improving the lives of patients but the extent of under detection worldwide and its causes are not known (Lang 2017).

30 years ago, people were diagnosed with dementia late in the disease process, however the health sector is diagnosing people much earlier in the disease, yet still prescribing the same late stage post diagnostic pathway.

This promotes dependence on families, and then the health system.

Therefore, I personally believe the most impactful thing as a society we can do, is to work towards a more timely diagnosis, and then to stop ‘late stage dementia management’ which encourages dependence on families and the health system, and move towards a post diagnostic experience, that encourages independence through rehabilitation and disability support, and which is something we all have a basic human right to. We must also phase out institutional care that historically we know ensures worse care, as well as the segregation and chemical restraint that is taking place via secure dementia units and anti psychotics, towards a more humane, rights based approach to dementia. This is about our most basic human rights.

As a woman with dementia, a past care partner to people with dementia, a mother, a daughter and a wife, I implore you to think outside the box to create change so that we are all supported to live a higher quality of life and well being than is currently being experienced by most people impacted by dementia.

Author: Kate Swaffer © 2017
Chair, CEO & Co-founder, Dementia Alliance International

Download the slides here:

Women and Dementia_IWD_GADAA_London_2 March 2017_Swaffer

References

Bredesen, D (2014), Reversal of cognitive decline: A novel therapeutic program, Aging, vol 6, (9), 707-717.

Bredesen et al (2016) Reversal of cognitive decline, Aging, Vol 8, No 6.

Erol R, Brooker D, Peel E, (2015) Women and dementia: A global review, Alzheimer’s Disease International, London.

Godfrey J, El-Badri N. (2009) Toward optimal health: advising aging women about dementia, Journal Of Women’s Health, 18(7), 929-933.

Lang L, Clifford A, Wei L, et al. (2017) Prevalence and determinants of undetected dementia in the community: a systematic literature review and a meta-analysis. BMJ Open 2017;7.

OECD, 2015, Addressing Dementia: The OECD Health Policy Studies, OECD Publishing House, Paris.

Podcasy JL, Epperson CN. (2016) Considering sex and gender in Alzheimer disease and other dementias, Dialogues in Clinical Neuroscience, 18 (4), 437-446.

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

Szoeke C, Robertson J, Desmond P, et al. (December 2013) The Women’s Healthy Ageing Project: Fertile ground for investigation of healthy participants ‘at risk’ for dementia, International Review Of Psychiatry, 25(6), 726-737.

Szoeke, C 2015, National Dementia Congress Presentation, http://www.slideshare.net/informaoz/dementiacongressfeb2015-szoeke

World Health Organization, (2012) Dementia: A Public Health Priority <http://www.who.int/mental_health/publications/dementia_report_2012/en/>