Category Archives: Younger Onset Dementia

Minna’s story: Dementia and PTSD

This week, we are introducing you to one of our newer DAI members, Minna Packer. She has written a very thoughtful article about dementia and PTSD, especially for our blog.

Thank you Minna for so openly sharing your story. We are all so much richer for having you in our lives, and definitely  recommend you follow Minna’s writings on her blog called Suddenly Mad: My Voyage Through Early Alzheimer’s.

“I will begin by saying hello. I am adopting this salutation from the eloquent late Richard Taylor, who always began writing in this way. This is in reverence to the man who offered so much insight to those with dementia and caregivers throughout the world, and fought the battle against stigma that is still so prevalent.

Hello. I am here, and I am pleased to be able to write and tell you about myself. I am a woman, age 63 and I have been diagnosed with early onset Alzheimer’s. My name is Minna Packer.

I’m an American, and now one of over 5 million people in the USA with this disease, and one of more than 47.5 million people in the world today who are living with dementia.

These are just statistics, numbers. Each of us has a story, that may help explain, elucidate, why we became ill. I try to tie together the threads of my own story, and though I am told not to look for explanations, my natural inclination is to probe. In my case, evidence suggests a link between developing post traumatic stress disorder early in my life, which put me at risk for dementia.

An increasing number of epidemiological studies have suggested that people who develop a neuropsychiatric condition such as PTSD in childhood, are also likely to develop Alzheimer’s disease later in life. For instance, large studies in veterans in the United States have indicated that soldiers who had PTSD in their youth were twice as likely to develop Alzheimer’s disease by the age of 65.

Researchers from the University Medical Center Goettingen in Germany have moved closer to understanding this mechanism, as they uncover a link between the two conditions. The hypothesis is that various risk factors eventually cause an aberrant activation of many genes that contribute to Alzheimer’s disease. [1]

While I am not a war veteran, I am a child of Holocaust survivors. The children of traumatized people have long been known to be at an increased risk for PTSD, and mood and anxiety disorders. There has been evidence that many Holocaust survivors and their children show changes in the epigenetic regulation of genes. Epigenetic processes alter the expression of a gene. Animal studies have demonstrated that epigenetic changes from stress exposure are passed on to their offspring. [2]

My late parents were Jews from Poland and Russia, and their families were murdered and destroyed in the Shoah. I never knew my grandparents, uncles, aunts, or cousins. My dad was the sole survivor of his immediate family. I am named for his sister, Minna, murdered at Auschwitz at the age of 28 along with her 2 year old baby daughter, Pesa. My late mother was from an Orthodox Jewish family in Russia. Stalin considered Jews un-persons and had a particular hatred for Soviet Jews. What Stalin aimed to do was in large part completed by Hitler in the Soviet Union.

My parents would not have met or married had it not been for Hitler. They were ill suited. By the time I was born in New York City, a first generation American, my parents were a couple who were shell shocked. There was no extended family and no guidance for how to be a parent. In place of family photos, my parents dresser was covered with framed photos of relatives who had been murdered.

My father was at turns charming, but often full of rage. My mother was often morbidly depressed, hideously anxious and reactive. I believe they both suffered from post traumatic stress. They were ill equipped to be sane nurturing parents. Though I was a smart kid who excelled in school and was talented and ambitious, the emotional underpinning of being born into this particular family, with it’s drama and abuse, did not provide the resilience needed a growing child.

That is the underpinning of my childhood history, and why I believe I was particularly vulnerable to PTSD.

The realization is that chronic diseases, including Alzheimer’s disease have developmental origins. What I’ve learned since getting this disease is that PTSD makes one more vulnerable to Alzheimer’s.

Originally I was diagnosed with major clinical depression and anxiety. What I really suffered from was PTSD. For years I was offered multiple antidepressants and benzodiazapines, medications which caused many side effects. Psychologists think that people do better combining therapy and medication. It’s supposed to help the patient utilize what they learn in therapy more effectively in their lives. Actually what may be happening is the brain is being damaged. Acetylcholine the neurotransmitter needed by the brain to effectively transmit messages between synapses is destroyed.

A healthy brain rebounds from the assault of anticholinergic medications. A brain that is vulnerable may not have the capacity to do so. Paxil is a medication I was on for a long time. It is an anticholinergic which I have now found out, interferes with this neurotransmitter acetylcholine. I was put on benzodiazapines (sedatives) for anxiety. I used to have a perfectly normal sleep cycle. When the symptoms of anxiety and depression reared their ugly head I was put on new medications, including sedatives, even though I had a normal ability to fall asleep and stay asleep. I had what is called a paradoxical reaction to Klonopin, and my previously normal sleep cycle was destroyed. I went from being a 7 to 8 hour a night sleeper, to only being able to get 3-4 hours of broken sleep. Natural sleep is vital in clearing amyloid from the brain. Introducing anticholinergics into my system altered my autonomic nervous system. Plus Klonolin is highly addictive. Had I only known when I was prescribed benzodiazapines and SSRI’s and SNRI’s that there is now suspicion that these drugs can cause neurodegeneration, I would not have taken them.

What does this all have to with Hitler?

Trauma causes emotional dysfunction. The trauma of having ones family murdered during the Holocaust changed my late father’s and late mother’s nervous systems – their epigenetics, which was then passed down to me.

Today, 20% of the remaining Holocaust survivors have Alzheimer’s in Israel. How many more are there who remain throughout the rest of the world? Now I am a child of deceased survivors who has this disease. The correlation between PTSD and trauma has been researched and evidenced. Now research points to PTSD and a vulnerability to getting Alzheimer’s.

History is always disappearing, but it impacts our lives with long term consequences. My experience is that I was made vulnerable to PTSD as a child, and now I know that those who have it are more vulnerable to developing dementia later in their lives. Add to that a brain which has been subjected to anticholinergic medications repeatedly, that can and do kill brain cells.

As many of you know Alzheimer’s is a very lonely disease. Connecting with others helps to keep us in the early stages.”

Minna Packer © 2018

References

[1] Ana Sandoiu, 2017,  How can PTSD trigger Alzheimer’s disease? Study sheds light, MedicalNewsToday.

[2] Rachel Yehuda, Nikolaos P. Daskalakis, Linda M. Bierer, Heather N. Bader, Torsten Klengel, Florian Holsboer, and Elisabeth B. Binder, 2016, Trauma’s Epigenetic Fingerprint Observed in Children of Holocaust SurvivorsBiological Psychiatry, Vol 80, issue 5 (2016), published by Elsevier.

Image source: Minna Packer

“Can You Hear Me Now?” by Carole Mullikan

We are honoured to have an article written by dementia advocate and pioneer, Carole Mullikan. Thank you Carole, for sharing your story, and for living so well since her diagnosis in 1995, by role modelling to us all by focusing on what she can still do, and that for many of us, it is possible.

Can You Hear Me Now?

“Not so long ago a man in spectacles paced everywhere testing his phone in a Verizon commercial.

“Can you hear me now? Can you hear me now? Can you hear me now?”

As a first-year teacher, that was a question I often asked myself when in front of a noisy bunch of teenagers. Over time, I learned how to quiet and focus teenagers in a classroom. Yet sometimes I still needed to ask the very back row,

“Can you hear me now?”

When I began making luncheon presentations in ballrooms at state teachers’ conferences, the question arose again. Sometimes microphones are forgotten. Sometimes they malfunction, necessitating greater lung power. Other times they must be tested and adjusted.

“Can you hear me now?”

At one national conference, the microphone was working just fine, but as I took the podium, I glanced up, seeing the massive, multi-layered crystal chandelier above. Good grief! I thought to myself, what could I possibly have to say that was worthy of such splendor? But being a seasoned speaker, I persisted.

These days, I no longer speak in classrooms or at conferences. Most often I speak to just one or a few individuals. That should seem easy, but having been diagnosed with dementia, “Can you hear me now?” is still an issue. The stigma attached to dementia causes others to listen through a perceptual filter telling them the person with dementia is often confused. What he says may be wrong. She may not have her facts straight. He might be dwelling in the past or experiencing delusions. What a person with dementia says cannot be trusted. Even when I am certain of my facts and speak with authority, I question that they can hear me through the diagnosis of dementia. Too often I fall silent.

Hear me now, please!

Being automatically deprived of my credibility hurts!

Copyright: Carole Mullikan 2017

More about Carole Mulliken: Carole is a DAI member and a member on our recently reinstated DAI Action Group, about to commence moderating a Discussion forum currenty being set up for members. She is also a founding board member of the Dementia Advocacy and Support Network International (DASNI), which was the first international online support group for people of dementia. Unlike DAI, membership was not exclusive to people with dementia.

With a diagnosis of multi infarct dementia, obviously now well over twenty years ago, Carole regards dementia advocacy as a second, unpaid career and herself a veteran of the dementia wars. She lives near Saint Louis, MO, and those of us at DAI salute her for being one of the shining lights who led the way for the rest of us.

Carole worked as an educator, a school counselor, a suicide crisis interventionist, an adjunct professor of composition, an educational consultant for a division of the U.S. Department of Education, and a freelance writer. She wrote and published a monthly online newsletter for an animal shelter and maintained its website. She has published freelance feature articles for print publications and for several websites.  Lisa Genova, Ph.D., author of Still Alice, recognizes DASNI and Carole Mulliken by name as contributing to her own understanding of the lived experience of dementia.

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/>

 

Mary’s 4th Blog from the UN Social Forum

screen-shot-2016-10-27-at-6-39-56-amFollowing on from our first blog, welcoming you to the new year, we begin the years blog series with our first one being the last account from Mary Radnofsky of the Social Forum she and Peter Mittler attended last year, representing DAI and all people with dementia.

Thanks again to them both for their excellent work, and special thanks to Mary for writing this particular series of blogs. It is quite a long read, so grab a pot of tea or coffee, and sit yourself down in an arm chair for a very interesting read.

Mary’s 4th Blog from the UN Human Rights Council – Social Forum

10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), October 3-5, 2016 (Geneva, Switzerland)

You know that family reunions are often fraught with peril when your cousin the hunter is seated next to your aunt the vegetarian, or when your nephew in med school talks about his latest dissection over turkey & gravy. Sometimes the things people say make us uncomfortable at the dinner table, and when it’s family, we often let them know – either with a disapproving glare or an interruption, sometimes a raised voice or an abrupt departure. Rarely does it come to slinging a handful of mashed potatoes across the room. (In fact, no food fights were allowed when I was growing up.)

So at the United Nations, when people with common problems but multiple perspectives get together to discuss how best to solve them, I was very comforted to see that everyone behaved quite respectfully.­ For the most part, everyone had to hear each other out if they wanted a seat at the table.

I saw only one exception, and it was on the last day of the forum. An audience member who’d been given two minutes to comment was rambling on through the five-minute mark with no intervention by the moderator. Another lady in the audience was squirming in her chair, looking around, raising the palms of her hands, then looking at me, as if appealing to me to do something. I whispered, “It’s ok; the moderator will handle it.” She shook her head no, slapped her knees, and loudly said, “But she’s not doing a thing!”

I was shocked by the breach in protocol, not having seen anything like it in over 20 hours of meetings. So I tried to calm her, and again whispered, though more firmly, “The moderator will take care of it.” She whipped her head around to search the audience and roll her eyes, then made an audible protest about how much time was being used, and how unfair it was. She’d metaphorically thrown a handful of mashed potatoes against the wall. But none of it stuck. No one reacted. I sat very still, facing forward, with my eyes focused on the panel of experts, also ignoring the outburst. But I expected a gravy boat to come flying from the opposite corner at any second.

About a minute later, the moderator thanked the speaker for her comments, and gave the floor to the next person. This is a civilized place, and moderators understand that sometimes it’s more important to allow a vague, meandering voice to be heard, than it is to respect time limits.

There may be criticism, avoidance, and disagreement, but no food fights at the UN. Enjoy.

Tuesday, October 4, 2016 Making Development Inclusive.

Moderator: Ms. Lidia Pretorious, Chief Director, Rights of Persons with Disabilities, Department of Social Development of South Africa

Ms. Judith E. Heumann, Special Advisor for International Disability Rights of the U.S. Department of State

Mr. Michael Njenga, Board Member, Pan African Network of Persons with Psychosocial Disabilities, stated that the purely medical model for assessment is not effective. There must be a needs-based social model.

Ms. Priscile Geiser, Chair, International Disability and Development Consortium IDDC

Ms. Rosangela Berman-Bieler, Senior Advisor on Children with Disability, UNICEF

(see the panel on UN WebTV: of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date)

Interactive Dialogue

Gian-Pierro Griffo, from Italy, spoke about the UN Sustainable Development Goals (SDGs), and that people with disabilities need to be consulted on the decisions and events that affect their lives. People are the actors in their own country in working for development. They have the capacity to apply the Convention, so their knowledge and competence need to be included.

Peter Mittler stated that disability organizations are dissatisfied with the implementation of the Convention, and with the lack of accountability of countries for CRPD. (Slide the Time Index to 1:02 of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date.) Peter wants to ensure that people with disabilities are co-partners on governmental committees for implementation, as the Convention requires, and he wants disaggregated statistics about children with disabilities in schools.

Tuesday, October 4, 2016 Side Event: Underrepresented Groups of Persons with Disabilities.

Co-organised by the African Disability Forum (ADF), Pacific Disability Forum (PDF), World Federation of the Deafblind, World Federation of the Deaf, International Federation for Spina Bifida and Hydrocephaly, International Federation of Hard of Hearing People, co-sponsored by the Permanent Missions of (TBC), with support from the International Disability Alliance. (Transcription available at https://synchshare.de/ida-cassandra)

Peter was given a generous amount of time to speak. Part of what he said was on quality of care, “We have evidence from the Organisation for Economic Co-operation and Development (OECD) that dementia gets the worst care in the developed world and we know it is unsatisfactory in the less-developed world. Many don’t get a diagnosis. Because young people are leaving the villages, old people are left isolated.

Peter also spoke on the successes of DAI: “We have persuaded the Alzheimer’s Disease International, which is the main international organization for people with dementia, with 85 national societies, to support our policies. So now they have a human rights policy, which includes full access to the CRPD and other conventions.”

Peter was critical of progress saying, “As far as we can see from CRPD reports, not a single member state has included people with dementia in their implementation of the convention; we ask why not, because we are fully entitled to it in Article one. That is indisputable, yet we are absent.” He added that, “About 30 countries have launched dementia strategies. They’re quite good dementia strategies; they contain the right ingredients and they may say nice words about the CRPD, but they don’t use the CRPD which they have ratified in creating dementia strategies.”

Peter also discussed the rights of children: “I’m sorry that no one in this meeting has mentioned that of the 57 million children out of school, more than a third are children with disabilities… I’ve been trying to draw attention to this for 15 to 20 years, ever since 1990 when the UN promulgated Education for All… We have a promise of a report from UNICEF institute of statistics in Montreal, with disability-disaggregated data for the first year of the SDGs but it’s in the coffin marked ‘when data become available.’ There is only some focus on children already in schools. And the UNESCO monitoring reports have said that, year after year after year. Some of us have protested about it; nothing has happened.”

I then spoke about the need for “Rehabilitative Education” (academic or skills learning) for people with dementia: (Transcription available at https://synchshare.de/ida-cassandra)

“My name is Mary Radnofsky; I’m from Dementia Alliance International. My comment is about lifelong learning. I’m interested in knowing if “Rehabilitative Education” is considered part of this category of inclusive learning. When people with dementia are diagnosed, it is assumed that they can no longer learn and this is, of course, a myth that needs to be broken; it is entirely false.”

I said that “Rehabilitative Education” should apply to people with dementia, since cognitive education is already guaranteed for people with disabilities to be lifelong learners. This could be another tool for us in the legitimate argument for RE-teaching us things that we lose due to degenerative brain diseases. Despite myths that we can no longer learn, the DAI Chair is getting her doctorate, I explained. I strongly advocate for anyone with dementia to be able to take courses in finance, formal logic, or math, for example, when we start to lose the ability to balance our checkbook or manage finances. And I declared that this “Rehabilitative Education” should be funded, just as any other rehabilitative speech or physical therapy.

Tuesday, October 4, 2016 Strengthening Accountability

Moderator: Mr. Stefan Trömel, Senior Disability Specialist, International Labor Organization (ILO

Ms. Malena Pineda Ángeles, Chief of program persons with disabilities, National Human Rights Institution of Peru

Mr. Alastair McEwin, Commissioner, Human Rights Commission, Australia, wants to eliminate discrimination against people with disabilities, so they have equal rights before the law, and promote principle of human rights the same as with the wider community. He says a government should be able to set up standards in any issue, to give community guidance, to be sure they comply with their Disability Discrimination Act. But he also said it takes time and resources to maintain and monitor changes.

Ms. Godliver Omondi, Senator from Kenya

Mr. Geir Jensen, President of the World Federation of the Deaf-Blind – made a statement read by assistant. He spoke of capacity-building by the International Disability Alliance (IDA) which has provided technical support to advocates from over 90 countries in 62 national overseas workshops. People became engaged with treaty bodies. Specific and mainstream monitoring processes were managed. Increased use of these mechanisms reinforced UN mechanisms too. As they are not a homogeneous group, he said, it’s a challenge to include all disabilities; there is a lack of reasonable accommodations , and extensive training is still needed for assuring the CRPD perspective is recognized.

Peter Mittler criticized the CRPD regarding accountability, to hold member states responsible for including a person with disabilities (Go to Time Index 59:45 at http://webtv.un.org/search/strengthening-accountability-social-forum-2016/5155220168001?term=social%20forum&languages=&sort=date.) Peter says that member states are not complying with implementation of CRPD Article 4, and that pressure should be put on them by the Office of the United Nations High Commissioner for Human Rights (OHCHR) as a direct outcome of the Social Forum.

Wednesday, October 5, 2016

Peter and Mary met in the café with Zhijun from the Peoples Republic of China, who was in Geneva studying about human rights, and asked about people with dementia in China; he said the challenges they still have, are for families to deal with stigma, hidden [harmful] practices, and basic human rights issues.

Peter and Mary also met in the café with Catalina Devandas (from Costa Rica), UN Special Rapporteur on the Rights of Persons with Disabilities, who asked us to suggest ways in which Member States can provide services for people with dementia for her upcoming report. Basically, she says, it is be the obligation of the state to provide support from a human rights approach. We told her about some of the DAI documents we’re working on, (e.g. the report on accommodating people with dementia at conferences, and creating dementia-friendly communities) and that we needed to get them ok’d by the DAI president to send them, but that we would get a summary to Catalina by the end of October, which she said would be fine, since her report would be published in March 2017.

Wednesday, October 5, 2016 Realizing the Human Rights of Persons with Disabilities

Moderator: Mr. Vladimir Cuk, Executive Director, IDA.

Ms. Theresia Degener, vice-chair of the CRPD Committee insightfully and clearly-explained about the implementation of the CRPD and monitoring of the practices in the 30 first countries that have been reviewed.

Wednesday, October 5, 2016

Implementation of Agenda 2030 under the CRPD: The Future We Want

Moderator: Bat-Erdene Ayush, Chief, Right to Development, OHCHR Academia

Ms. Abia Akram, CEO National Forum of Women with Disabilities of Pakistan

H.E. Ms. María Fernanda Espinosa Garcés, Ambassador Extraordinary and Plenipotentiary, Permanent Representative of Ecuador to the United Nations in Geneva

Ms. Eppu Mikkonen-Jeanneret, Senior Adviser for Global Social Policy, Ministry for Foreign Affairs of Finland

Ms. Sanja Tarczay, President of the European Deaf-blind Union

Watch on UN WebTV here…  

Interactive DialogueMary suggested the creation of a CRPD resource database: (Slide the Time Index to 35:35 at http://webtv.un.org/search/implementation-of-agenda-2030-under-the-crpd-contd-social-forum-2016/5157102747001?term=social%20forum.) Mary said, “In the three days of this forum, I’ve heard people speak of some wonderful programs they have created or observed in their countries or communities…”

“I suggest that the United Nations Human Rights Commission create a Library of Best Practices, with Primary Resources used in each country that has ratified the CRPD, to improve the conditions of life for people with disabilities. These documents would not be reports by officials, but rather they would be brochures, workbooks, educational booklets, handbooks to help people in airports, computer programs to assist people, phone Apps tied to the CRPD, etc.”

Whatever we can do to spread knowledge, will help people with dementia to make better decisions about what they want and need, to fulfill their human rights.

Closure of the Social Forum was celebrated in a “Family Photo” by a few of us at the end of the meeting. (I’m not in this one because I was taking it!) You get the idea: the world’s family at the annual reunion, each with a special dessert to offer.

Mm-mm! Good!

Mary Radnofsky PhD

Our Christmas wishes…

Firstly, we wish everyone a safe and peaceful festive season, and thank everyone for their support and input to DAI. It has been a very busy and productive year, and we are grateful to our members, our supporters, our sponsors and especially to anyone who has made a personal donation to help us continue with out work.

Rather than ending the year here with a wrap of our activities, which we will do when we publish our first Annual Report either before the end of December 2016, or early in January 2017, instead we are posting two very important Christmas wishes…

phyllis-fehrThe first request or wish was written by one of our new board members, also the Vice Chair of the Ontario Dementia Advisory Group, Phyllis Fehr.

“To the nurse who may care for me:

Hi, I am your assignment for today. I know I am just one of many but I ask you to please take the time to know me. You see I once was also a nurse. That really doesn’t matter as I am a human being. I come with an education and feelings. I am also a wife, a mother, a grandmother and more. Please take the time to read my chart as you can gain much knowledge about me before you ever meet me. In it you will find my medical history; this may give you a glimpse of what to expect from me. It will tell you what is being treated now.

Know full well that, that may not be my only problem.

What you see when you walk through that door may not be very telling. As you would see a patient that looks well and capable, able to do things on her own. If you don’t take the time you will not know that I have a cognitive impairment. You may not know that what ever you tell me is lost the minute you walk out of the room.

Don’t ridicule me for writing things down; you see I do this, so I will remember which will make your job easier in the long run. You see if you took the time to know me you would understand this, you would have not asked me if I was a baby who can’t remember anything. You would not embarrass me in front of others.

You see I know I have a problem, I am just trying my best to live well with what I have. If I can make notes then I can explain to my family what is happening, rather than them having to interrupt your already busy day to find out what is happening. I want to help you but in order for this to happen you must understand me. Well not just me all patients that you care for. You see stress makes my cognitive impairment worse, so yes you may have your hands full but I don’t mean to be a problem.

You see what is happening is that I am having a problem that I may not be able to comprehend or express but if you are aware you will be able to help me through this. You see I have early onset Alzhiemers, it started in my late 40’s.

No, I don’t look like a typical Alzheimer’s patient.

So it is hard to see it, but look, look there in my chart, oh there it is. If you aren’t well informed on the disease ask your educator. You could also go on line or you could become a dementia friend, they have lots of educational material on the dementia friends web site.

If I cause you any problems I do apologize. I do not mean to be a problem but this is what I live with. This is what many people with cognitive impairment live with, no matter what the cause of the impairment.”

Phyllis Fehr Copyright 2016

All people with dementia, and all members of Dementia Alliance International (DAI), have one other important Christmas wish:

“If you don’t believe we have dementia, please contact us in person, and make the time to find out about our the reality, before you accuse us of not having dementia behind our backs.

If it is really necessary in order to still believe us, because ‘we don’t look or act like we have dementia’, most of us would invite you to come with us to our next doctors appointment.”

Dementia Alliance International Copyright 2016

World Alzheimer’s Month 2016 wrap up

IMG_4978We have attempted to shared as many #RememberMe stories as possible for World Alzheimer’s Month 2016, all either highlighting some very personal experiences of living with dementia, or some of them about some of the  brilliant local, regional, national or worldwide advocacy some members are involved in.

Whether it is global, or simply helping the person next door, it is important work. Sharing a personal story via a blog, or at you local town hall or church, is just as important as making a video thy is shared more publicly. It is not a competition of who is doing more, or of the best.

There are simply not enough days in World Alzheimer’s Month to share them all, which also means we have many members stories to continue sharing over the next few months! What we did was to sent out messages to members to send in their stories, and the ones we have shared this month are simply from those members who responded. We have not even been able to add them all during September, but will endeavour to do so over the next few weeks.

That does not mean, of course, that there are not many other brilliant stories of excellent advocacy to share. Less than 5  years ago, there were not so many people with dementia actively working so publicly as advocates; today, we could (if we had the funds to employ someone!), write a daily blog every single day of the year, as so many are all over the globe are now doing wonderful things.

People with dementia have been sharing their own stories, in their own ways, of ‘Living with dementia’ for some time now. Each person’s way of raising awareness of dementia is important, whether it is a blog here or elsewhere, an article in a magazine, an event of some kind, a documentary or at a conference.

And all of these stories or advocacy work should be shared widely; this is in part what advocacy means.

We all have really important issues including reactions of close family and friends, coping with disability due to dementia, and even issues such as stigma, isolation, loneliness and discrimination to share, but also there are many stories of living well with dementia, in spite of it. These are equally as important, and just as important, are the events which may have limited or broad outreach, as raising awareness is.

So to end our series of daily blogs for #WAM2016 #DAM2016, we are highlighting a few things our members and others have been up to this month.

Wendy Mitchell, Jennifer Bute, Chris Roberts, Keith Oliver, Larry Gardiner and others in the UK have been involved in a documentary being made for Japan out living with dementia.  Wendy lives in York and writes a great blog, including this one about having the Japanese film crew in her home recently. DEEP and YoungDementiaUK have been very include wiht a lot of activities this month as well, including hosting a conference.

There have been so many conferences in so many parts of the world this year for #WAM, we would need to write a book to cover them all. Nigeria perhaps was the most important one of all, as the less developed countries are needing so much more support to raise awareness than the developed countries; in fact, even for people to get a diagnosis is a major concern for them!

Chris Roberts and his wife Jayne and daughter Kate from Wales had a BBC documentary made about their story of dealing with dementia, and it was great news to read on Facebook it has been picked up by an agency for global distribution. Chris has also been nominated as a finalist in the National Dementia Care Awards and we wish hm luck again this year.  You can view Chris’s documentary here…

Other members have been busy as well, and we celebrate again the prestigious Inaugural Richard Taylor Memorial Advocates Award won by Mick Carmody this year.

Some of our Aussie members such as Eileen Taylor and John Quinn and their care partners have been busy including working on a Dementia Friendly Community project. You can see a video of John Quinn talking about living with dementia here. Edie Mayhew and her partner Anne Tudor have also been very busy in Ballarat working on a campaign in their home town of Ballarat called Bigger Hearts.

It is not possible to cover everyone’s stories or activities today, and if we headed to America and Canada to give a preview here today, it would take too long to write, let alone read!

Susan Suchan though, has been involved in a documentary of her life and what it is like having dementia, and in particular living with the condition known as Primary Progressive Aphasia.

You can read more about Susan’s documentary here…

In our final blog for World Alzheimer’s Month 2016, we apologise to those we have not (yet) recognised for their advocacy or other efforts, but we hope you will think about sending us your stories for future blogs here.

It has been a very busy and productive month all over the world as we collectively raise awareness of “Dementia from the Inside Out”!

Sandy Halperin: “it is possible to live vitally despite deficits”

sandy-halperinWe continue our #RememberMe daily blog series for World Alzheimer’s Month 2016 #WAM2016 #DAM206 with a story about one of our members Sandy Halperin from the USA.

Sandy has been a fervent advocate, and continues to work to change the myths, stereotypes, stigma and fear surrounding dementia. Thanks Sandy, for all you have done since being diagnosed with dementia, and all that you continue to do.

In a story published on CNN.com, which you can read in full here, it says:

“Losing the ability to think and recall — what could be defined as the very essence of being human — is almost universally terrifying. So terrifying that many people dwell for years in a state of denial. In fact, according to a survey by the Marist Institute for Public Opinion, an Alzheimer’s diagnosis stirs more fear than any other major life-threatening disease — even cancer or stroke.
Denial, it would seem, shrouds the mind from dementia’s more appalling images: patients shuffling aimlessly around a nursing home in wheelchairs, despondent. Or the converse image of the agitated patient thrashing wildly with no concept of where — or even who — they are.
Sandy bristles at those images of Alzheimer’s. While they may capture what the disease looks like during later stages, he says they ignore what could be many productive years during the early and middle stages.
In those years, he says, it is possible to live vitally, despite deficits. He believes he is doing just that.
As best as he can, Sandy remains active and social — dining with other residents at his retirement village and taking twilight walks and pre-dawn swims to try and delay, at least for a while, the symptoms of his disease.”
Watch this video, “Dr. Sanjay Gupta Reports: Sandy’s Story, Part 1” of a series worth watching. Thanks for all you continue to do Sandy.

Time to examine my personal motto, by Mary Beth Wighton

Mary Beth having fun! Photo credit: Elaine Wiersma
Mary Beth having fun!
Photo credit: Elaine Weirsma 2016

DAI member and a founding member of the Ontario Dementia Advisory Group (ODAG), Mary Beth Wight shares a story with us for World Alzheimer’s Month 2016 #WAM2016 #DAM2016 that she wrote about living with dementia in 2013. Thank you Mary Beth, and keep up your amazing work with your friends and colleagues of the ODAG in Canada. We will share a video about their work later in the month.

Time to Examine My Personal Motto

By Mary Beth Wighton, Person with Dementia Date: September 8th, 2013

“It was one year ago, on September 5th, that my life changed forever. It was on that day I was diagnosed with Frontotemporal Lobe Dementia (FTD). I suppose you can call it a one year anniversary. But, I associate anniversaries with parties and champagne. I partook in neither.

What I have done is a lot of reflection on this past year. It is a bit strange as it seems longer than a year. I think that perhaps the lengthy time it took to be diagnosed with FTD feeds into this time line. At minimum, that tacks on another four years.

As many people will tell you who are diagnosed after a long struggle, it was a relief. I finally have something to call this “thing.” It now gives me the ability to put a plan together and adjust my life accordingly. I now know the kind of help me and my family need. I can now refer in concrete terms (as much as that means) to symptoms, medications, tests, and future plans.

I have always been a person who does not like too much grey. I prefer black and white. It provides sound boundaries that I know I am to operate in. Little room for confusion or error. Having dementia means that I now live in the grey. Boundaries can change quickly and easily. I have tried to learn to adopt to these changes. It has been quite the learning curve.

It wasn’t long after my diagnosis, that I was introduced to and adopted for my personal motto: carpe diem. In loose translation, this Latin phrase means “size the day;” be spontaneous; just go for it. I have not kept this motto to myself but rather have shared it with anyone who will listen to me. I have publicly spoken and written about carp diem.

While I was in the corporate world, at the key milestones and at the end of projects, the team took the time to evaluate our effort. We would compare our results to the intended objectives and determine our success. We would challenge ourselves on how we could improve so future projects would benefit from our learning of the previous project. I found this to be an excellent methodology for project management.

I consider my life not as a project but as a journey. However, I feel I can still use this methodology of evaluating how successful I feel I am in my life.

With that said, I bring you back to one year ago when my goal was to live carpe diem. I now am at a milestone point, where I am reflecting on if this has been successful. Remembering the definition of carpe diem, I am quite happy to state I believe I have been very successful.

I changed when I was diagnosed. I made a decision to be an advocate for those with dementia. I want to help dispel stigma and educate all those who will listen. I want to be proactive in obtaining support and putting my “ducks-in-a-row.” I want to step into the lime -light and stand up to speak for those who are unable. I want to share my journey by writing journals and promoting them. But more importantly than all of that, I want to be a better spouse, mother, daughter, sister, aunt, and friend. I have searched and found a deeper relationship with God. I have renewed relationships and enjoyed meeting new people and making new friends.

Carpe diem is not just my personal motto, it has become my families. We try not to take things for granted anymore. We work hard to try and speak more gently with each other and be more encouraging. We have done a wonderful job at making new memories and jumping at chances for adventures. We are more apt to try new foods and restaurants. And each day, we tell each other of our love for them.

So when I compare what carpe diem means to how I have lived my life this past year, I must say it has been a wonderful success. But this is success as a team, not just myself. My Dawn and Brianna have had a stellar performance. Support has come from all different avenues that have helped me in achieving living for the day.

I have yet to define goals for myself for this coming year. For the new few days, I think I am just going to enjoy the wonderful feeling of all the successes.

Thank you to each and everyone of you who have helped me live with dignity and carpe diem.”

Copyright 2013 Mary Beth Wighton

“Dementia and the kiss of love” by Susan Suchan

As we celebrate our members and share their stories in the spirit of the World Alzheimer’s Month 2016 theme #RememberMe #WAM2016 #DAM2016 we have had a wonderful response from our members to contribute their stories with us here. Susan Suchan has spoken here before, but her story today is of love.

Here is her story about the kiss of love…

screen-shot-2016-09-12-at-6-09-01-am“Some people may look at this picture and become offended that two women are sharing a kiss, some may even wonder if this is a Mother/Daughter moment. The list of perceptions could go on and on.

I am living with a probable diagnosis of early on-set Alzheimer’s, FTD/PPA for quite some time. I choose to live my life with purpose and in the moment. Dementia can reek havoc on my perceptions of a joke, a plan or idea and yes, even emotions.

I may not always immediately connect a look or touch with the correct emotion but ultimately I do. It is an ever changing disease and not everyone will experience it in the same way. I am passionate to help other’s understand and find ways to bridge the gap. I/we, with the diagnosis, are THE best to educate about the intrinsic and at the same time remain believable to those who see not the person, but only the disease and what they have been told to expect.

I may speak in a way that is not understandable at times, I may walk as though I’ve had a few too many nips! Trust me, I am adapting to the changes in my brain that no one would ever ask for. Perceptions are not only misunderstood from my side, they are misunderstood from those I expect to know better. I guess you could now call me a ‘teacher’. I didn’t sign up for it, the pay is nil, but I won’t ever quit.

This picture, is of my sister and I. I am on the left and am the oldest of the two. This is a kiss of love.”

By Susan Suchan

“The day my dream sank” by Michael Ellenbogen

Screen Shot 2016-09-04 at 6.30.27 AMMichael Ellebogen is a member of DAI, and has been a long time global advocate for change. He has shared his story of living with dementia with us  here, including the frustrations of living with cognitive disabilities. Thank you Michael for allowing us into your inner world for this series of daily posts for World Alzheimer’s Month/Dementia Awareness Month 2016 #WAM2016 #DAM2016….. This is his story.

“My name is Michael Ellenbogen. I am a writer, husband, and father. In 2008, at age 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was always very successful in being able to accomplish anything I set my mind on doing. This diagnosis has changed my life in many ways.

When I finally received my diagnosis, of Alzheimer’s, it was a relief to have an answer that explained the symptoms I was experiencing. I had heard of Alzheimer’s disease, but I really did not know what it was until I did more research. When I learned there was not a cure for Alzheimer’s I was shocked, and I was no longer thankful for the diagnosis that answered so many of my questions.

Alzheimer’s disease has impacted so many aspects of my life like my career as a high level manager, but I was surprised by how it has impacted my hobbies. Not that I had many. I used to love boating and tinkering with electronics but I can no longer do either of these things. Electronics are not forgiving, and if I make a mistake the projects can go poooofff when I touch the wrong component. This has happened.

I have tried to take up new hobbies such as golf, but learning new things is difficult. I could not keep track of the ball. It took me much longer to tee off then others, and I felt too much pressure when I was slowing down the people behind me. I would love to play golf but at my own speed and without all the pressure.

I became increasingly frustrated. Not because I have Alzheimer’s, but because of the disparity and stigma surrounding this disease.

Let me explain. Everywhere I turn, I hear or see something related to cancer and HIV. The government contributes 18.7% of the NIH research budget to cancer, 9.9% to HIV, and Alzheimer’s receives only 1.5%. This leaves me with one question. Why? There are so many more people living with Alzheimer’s than HIV, yet we receive so much less funding.”

And here is Michael’s story his frustrations with how dementia has impacted his ability to enjoy boating, one of the loves of his life…

The Day My Dream Sank

“I have been a very lucky person. I have had the opportunity to own 5 boats in my life time. The last boat I had was sold because my wife and I had no time to use it because of our jobs. That was about 17 years ago. I really did not have the time again due to our work schedules.

Then came my diagnosis of Alzheimer’s disease (AD) in 2009 at age 49, after struggling to get a diagnosis for 10 years. Because of that I was forced to retire. That thought never left my mind and I kept looking at a boat but I had the fear that I would decline in another year or two and would no longer be able to control a boat.

I once had great skills and could easily control a twin-engine boat and move it sideways into any position I wanted. That requires lot of knowledge and multitasking. I was fairly sure I would not be able to do that anymore because of my AD. Over the years I kept looking at a boat every chance I could and I just had this dream to buy another but I was so afraid of the added limitations that have been placed on me. Then I realized that the two years were now 4 to 6 years and while I did decline it was not as bad as I thought it would be. I guess I am also lucky there, if one could look at this dam disease.

So I decided to look for a used boat. While I found many, I was always afraid to buy them because of the possible repairs needed. That is another problem. I once was able to do most of the work on the engines and keep the boat well maintained. I am no longer capable of doing it for reasons I cannot even explain. I don’t even wash and maintain my car, which was always sparkling clean. Something in me had changed; something that would make me look lazy if you did not know I have AD. I just don’t do things anymore. So as you can see this would create many other issues, but I figured I was going to finally live out my dream. I used to say we were the poor boaters because we had to do all of the work, while many had their boats well maintained and they just came down to enjoy them. That would add a lot to the cost but I knew this was my last opportunity if I was going to do this.

I have been able to find ways to make up for my inabilities. I was even looking for a boat that had what is called a bow thruster. That would allow me to have more control to make up for my loss of skills. This looking went on for years, and I finally came to the conclusion that I would look at a new boat to insure all of the issues would be handled under warranty.

As I tested new boats I found that the high-end boats had technology installed that would make up for my lost skills, and I was so relieved that I now felt very comfortable and all of the issues were now being addressed. But what was great with this new boat is it had a joystick feature. This option allows a novice to look like a professional. It’s almost like playing a game. Whichever way you move the joystick the boat does it all automatically. That is no easy task when you know what is involved. I find the new boats totally amazing. I also now had the confidence that I also knew in my mind that my wife would be able to step in if needed.

I set my sights on 2016 Regal 35 Sport Coupe. After some negotiations I was having very high anxiety and fear of what I would consider the unknown. I was very surprised that my wife was even okay with making such a purchase. When it comes to deals I always got some of the best deals. With all of these issues and lack of commitment it is like being on a roller coaster. One minute I wanted it so bad and then came so many fears and I was unsure of the ones I did not know of. One of my problems is that I can no longer see all of the issues at once but can only think about one at a time.

I finally told the sales guy of the issues and did not go through with the deal. He said if he could resolve all the issues I could take a test ride to see if I would feel comfortable being behind the wheel. They finally came back with such a great offer that I could not refuse. As we had to put things in writing I realized many of the things that made me feel comfortable were not being put in writing. Things that were said were not the same. All this was creating even more anxiety for me. It does not take much to do that but all this started the roller coaster effect and feeling sick to my stomach at times, but I really wanted this boat, so I continued thinking we would overcome all this.

I also realized I was not being as sharp as I use to because I could not keep track of all of these issues and needed my wife to do it who just kept letting them getting away with each of these issues. I was also wondering what I did not know that I did not pick up on. I figured we could work this out by the final signing as I had made my request.

In the meant time we started purchasing many items for the boat as it is like buying a new home in some ways and you need a lot of things. I had forgotten all that. I had made a list of items needed and went into the store to buy them. I came out spending a lot of money and bought many things. Then I realized most of the items on the list were not even purchased. That just created more concerns of my inabilities to get things done right and my wife was not helping as much as I was counting on. I had forgotten how expensive all this was. It was not the money but trying to keep track of all of these things. I just figured I would get over it but seeing them all pile up on my floor was starting to become a bit overwhelming and added to the already existing anxiety.

The night before the sea trail I had trouble sleeping. I had so much anxiety and fear. I even felt like I was going to have a heart attack as I was getting pain in my chest. I finally told my wife and she said we were not going to get the boat. I was so relived and prepared to do that.

But then we saw the boat again at our sea trail and it was such a great looking boat that I had decided to move forward with the deal and take the risk. I kept telling myself it would get better once it was over and I pushed on.

When the captain came on board he started to explain how I needed to do certain thing in sequence otherwise I could do damage to the boat’s electronics. Here is a person who the day before had trouble using the remote for the TV. All of this makes me really question my abilities. Then there were the markers on the water I needed to follow. I was a bit confused and concerned about doing the same as the captain when I was on my own. It did not help that most of the water in the area was low of 3.6 feet at mid tide.

There were some issues with the boat but think they could have been resolved. But then again there were various markers that were being pointed out to me that I would need to remember later so I could navigate safely. In my mind I was wondering how I could possibly do that when I have so much difficulty remembering. Then as I looked around me on the open water I became panicky and scared as I just felt so overwhelmed that I was trying to hang on to a dream that I was no longer capable of doing. As much as I loved this boat and it was the best boat I had ever had for just one week. I had to finally come to the realization that my AD has made it impossible for me to do this safely.

I had such difficulty making decisions throughout all this time, and I believe my old self would have never even allowed me to spend so much money, but all of my executive functions seem to be a mess. I think the lesson to be learned here is that we must learn to simplify our lives, but that is easier said than done because I still want my boat. I realized deep down it has to be this way but it does not make it easier.

It’s times like this when I really hate this dam disease. It has taken away all of my hobbies. So I guess that last boat did not count since I only kind of owned it for a week. This is just so hard for me to accept.”

Michael’s book From The Corner Office to Alzheimer’s is available here.