Concluding Remarks from our Fifth Year of the Dementia Awareness Program

As we head into April of 2021, this marks the end of our fifth year of the Dementia Awareness Program. Since October 2016, our group of dedicated high school students and alumni from Havergal College in Toronto, Canada have worked to raise awareness of dementia among the student body through connecting student volunteers with seniors with dementia weekly at a local seniors’ residence. In addition, our group has created and maintained this awareness blog with the goal of reaching the wider community. Our readership has expanded to over 3,000 globally.

Despite the many changes and challenges to our lives this past year due to COVID-19, our group has continued to champion our blog’s mission to educate the community and de-stigmatize dementia. Our two student leaders, Zoë and Selina, have worked hard to put together this year’s monthly blog series – featuring the voices of dementia healthcare professionals, caregivers, and patients. We would like to express our appreciation and gratitude to Erika Friesen, Dr. Patrick Chu, Catherine Molnar Livingstone, Allan S. Vann, and Wendy Mitchell for sharing their insights on dementia on our blog. Our guests have shared their wisdom on what it is like to work with individuals with dementia or live with early-onset dementia themselves, what they wish others knew about dementia, advice for family caregivers, and how the COVID-19 pandemic has impacted them. We could not have put together such a successful and meaningful blog series without all of their help.

 

To our readers, we hope that you have enjoyed reading this blog series and learning from the experiences and perspectives of the featured healthcare professionals, family caregivers, and patients with dementia. If you have feedback or ideas of what blog series we should do next year, please do not hesitate to leave us a comment on this post.

 

If you are interested in learning more about dementia, please feel free to read through our previous blog posts from past years as well. 

·      2019-20 monthly series: community support and resources available for dementia patients and caregivers, with a focus on Canada’s first National Dementia Strategy published in 2019

·      2018-19 monthly series: featured new dementia research and leading female experts in this field

·      2017-18 weekly series: current research developments in dementia and “Ask the Expert” questions answered by Professor Nathan Herrmann

·      2016-17 weekly series: foundations of what dementia is, its prevalence, causes, early warning signs, treatment, prevention, and more 

 

Last but not least, we would like to sincerely thank Professor Nathan Herrmann for his continued support and guidance over the program and this blog for the past five years. Most notably, we would like to thank him for generously sharing his time and expertise to mentor our former student leaders with dementia advocacy and equip them and us with the skills to go on and train new students to lead the Dementia Awareness Program – as this program’s legacy continues on at Havergal College even after former student leaders graduate. This blog would not have been successful without the mentorship of Dr. Herrmann. For more information on dementia, you can also follow Dr. Herrmann’s “Memory Doctor” blog for dementia caregivers and read his most recent post titled, “Caring for a person with dementia during the COVID-19 pandemic”, at: http://health.sunnybrook.ca/memory-doctor/

 

On behalf of the Havergal College student and alumni leaders of this program, thank you for your continued support and engagement with the Dementia Awareness Program!

 

 

Professor Nathan Herrmann and Student Executive Team

 

Chair                Selina Chow

Vice-Chair       Zoë Stevens

 

Nathan Herrmann MD FRCPC

Professor, Faculty of Medicine, University of Toronto

Head, Division of Geriatric Psychiatry

Sunnybrook Health Sciences Centre

 

Voices of Dementia Patients: Wendy Mitchell

This month, we had the incredible opportunity to interview an individual living with dementia. Wendy Mitchell is a 62 years young lady from Yorkshire, United Kingdom. Wendy was diagnosed with young-onset dementia in July 2014 and worked at England's National Health Service until her retirement in 2015. Wendy is a strong patient advocate, and has published about her experiences with dementia in her Sunday Times Best Seller book titled "Somebody I Used to Know", as well as on her personal blog. She is here with us today to share some insight on her journey with young-onset dementia.

1. Can you tell us about your diagnosis of dementia and your initial reaction to the diagnosis?

Like many people at the time, I was ignorant. I thought dementia was age related so couldn’t possibly be that. However hindsight is a wonderful thing and I soon realised dementia isn’t age related as many of my dementia pals, playmates as I call them, are in their 30’s, 40’s, 50’s and beyond. My initial reaction was a belief it was the end because no one told me any different. The diagnosis process is very clinical and focuses on what we can no longer do. My Consultant gave me a hand shake, a sad look and I was told ‘There’s nothing we can do’. No words of encouragement, no indication of how life will change, no positivity. The psychological effect of words and body language should never be underestimated by any healthcare professional. The way they deliver any news or simply talk about it can make or break that person.

 

 When they say there’s nothing they can do, We go away despondent and believing it to be the end…..I did as do many others. …how different my consultation could have been if she had turned that wound and said:

 

“Yes, the diagnosis is that of Young onset dementia and not something anything would wish to have. But think of it as the start of a different way of living; a way of adapting; of trying to outwit the challenges dementia will throw at you. I might not be able to do anything for you but there is still so much you CAN do, albeit differently and with support.”

 

How different my mindset would then have been on leaving her office with those different words ringing in my ears. Sending me away with a hope of a life instead of despair.

 

When people hear the word ‘dementia’ they immediately skip to the end stages, forgetting there’s a beginning, a middle long before the end with so much life still to be lived. I know I did.

2. How has life been different since your diagnosis? What activities have you found to be helpful for managing dementia?

Well life has been very different. I used to be a very private person but now my girls say I’ve become this gregarious alien that I quite like. So I’m more outgoing, a more sociable person than I ever was. Any activity that you enjoy is good for dementia.

 

My village community know me as the camera lady first and the person with dementia second. Everyday I walk around my village taking photos of our beautiful neighbourhood and then share them each evening on out village Facebook page on line. People get immense joy from looking at my photos, but also it gives me a reason to exercise each day. I don’t worry about getting lost or forgetting where I am because I know that anyone I meet will show me back to my house. So communities can be a great help to each other. One family had kept their fathers diagnosis a secret and didn’t want to share it with others in case they were suddenly ignored. But then the father started getting lost on his daily walks so they revealed to the village that he had dementia. Now everyone looks out for him and helps him to find his way home again if he gets lost. No one laughs or ignores, people accept each other and now he and his family feel safe again. 

 

I’d never used technology before dementia, I didn’t even know what an iPad, smart phone or apps were, but I have 2 very patient daughters who sit for hours with me repeating how to do something until I can do it on my own. Now technology enables me to remain independent. Alexa is wonderful. She reminds me daily to do things, take medication etc, she can confirm the day and time when I become disorientated, she switches the upstairs lights on to reduce the risk of me falling in the dark and she can even put the kettle on for my cuppa tea. 

3. What have you learned through your journey with dementia?

I soon learnt there is a life. Adventures still to be had. Dementia has taught me to live in the moment. We go about our life wishing for the weekend, wishing for the next holiday, wishing for next year but we miss what we have now. The beauty around us, magic moments that occur every single day if only we’d take the trouble to stop and look.

 

I’ve also learnt never to give up on yourself, many others will do that for you. Believe in yourself. After all who would have thought I could have written a Sunday Times best seller since being diagnosed? My consultant certainly didn’t believe it was possible. 

4. I see that you are a strong advocate in the community for individuals with dementia and are passionate about raising awareness about dementia. Can you tell us about what inspired you to become an advocate? How can we as a society better support individuals like yourself and others with dementia?

I was so shocked at the lack of awareness and understanding both in the community but also in the healthcare world that I now put my head above the parapet and speak out for the reality of dementia. Yes we have a bummer of a diagnosis and some days are really rubbish, but we all had talents before a diagnosis of dementia we don’t suddenly lose those talents overnight when we receive a diagnosis. I speak out for those no longer able to speak for themselves. Even in the later stages, people still have emotions, still need a hand to be held and know someone loves them. There are so many other ways of communicating with people other than the human voice, you just have to find a way that works for that person. My mantra is ‘There’s always a way'.

5. Have you experienced any stigma surrounding dementia that you would like to dispel?

The main stigma is this belief that we suddenly need wrapping in cotton wool. For the kindest of reasons people start to do things for us. If we don’t do something day after day, we forget and then you’re stuck with doing it for us.

 

My daughters use to do loads of things for me in the beginning – for the kindest of reasons – they’d help me with my coat on for example – but I could still put on my own coat. If I suddenly stopped and allowed them to do it, within a few weeks I’d forget how to put on my own coat. I told them that if they continued they’d have to come to my house every time I wanted to go out – they stopped immediately.

 

But also because of societies attitude, people believe people with dementia CAN'T do so much. But there’s still so much we CAN do. We just need the support and patience of those around us to help us continue to do the things we love. I’ve done a Firewalk, a Glider flight and a Skydive, all since dementia so positive risk taking is for everyone, including those of us living with dementia.

 

What my book, Somebody I Used to Know, shows, is how you must never give up on yourself, others around you will do that.

 

We would like to sincerely thank Wendy for taking the time to share with us her journey with early-onset dementia. Wendy, you are absolutely inspirational to all of us and we thank you for sharing your story and passion for advocacy with us. Wendy also runs a blog called "Which me am I today? One person's experience of living with dementia", and can be found at https://whichmeamitoday.wordpress.com

Voices of Dementia Caregivers: Allan S. Vann

This month, we had the wonderful opportunity to interview Allan S. Vann, a retired school principal in New York, USA who became a full-time caregiver to his late wife Clare since her diagnosis of early-onset Alzheimer’s. He is here with us today to share some insight into his experiences as a caregiver for a loved one with dementia. 

1. If you are comfortable sharing, can you tell us about your caregiving experience and your loved one’s journey with dementia?

For the first four years of my wife’s journey with early/young-onset Alzheimer’s disease (AD), my life was one of non-stop daily 24/7 stress, with much sadness and anxiety, often accompanied by periods of mild and/or serious depression, along with intense feelings of anger, doubt, guilt, frustration, loneliness, and many other emotions.  Similar strong emotions often result in many caregivers taking anti-anxiety or anti-depressant medication, sleeping pills, meeting regularly with doctors or therapists, or experiencing dramatic weight gain or loss.  In my case, stress drove me to my comfort foods and I gained nearly 100 pounds during those years.  I still haven’t lost the last 40. Stress also led me to develop eczema on my face and scalp.

Helping a loved one with early to moderate stage Alzheimer’s with the most basic activities of daily living ... brushing one’s teeth, showering, getting dressed, eating, taking daily medications, etc. ... becomes progressively more difficult.  Caring for a loved one who is constantly confused, no longer remembers your name or who you are, or who can occasionally become aggressive, is emotionally painful. 

After caring for my wife by myself at home for almost 7 years, I finally had to place her in the dementia unit of an assisted living facility.  Caregiving then was then no longer my primary role … my role morphed from primary caregiver to primary care advocate to make sure that my wife was being treated properly each day.  But that new role didn’t really lessen my daily stress because even though my wife was in excellent facilities, many staff members were not sufficiently motivated, trained, educated, or properly supervised to consistently provide the care I had expected her to have.  That led to many meetings with administrative staff to discuss instances of poor practice or examples of uncaring personnel. I remained her care advocate when she spent a month in a psychiatric facility, and finally when she entered a nursing home.

Fortunately, due to long-term health care insurance, I did not face perhaps the biggest cause of stress for AD caregivers here on Long Island, NY.  There is a tremendous amount of financial stress faced by most caregivers.  Unless one qualifies for Medicaid, is very wealthy, or is lucky enough to have outstanding long-term health care insurance and prescription drug coverage, caregiving costs can be astronomical.  For someone with AD here on Long Island, assisted living facilities generally run between $7-$10,000 per month ... or more ... and nursing homes will charge about $16-$19,000 per month ... or more.  24/7 home health aides will cost about $15,000 per month ... or more.  Caregiving costs can drain not just your loved one’s bank account, but also the retirement life savings that the caregiver will need for the rest of his/her life. 

Once my wife entered assisted living, I suddenly had to deal with daily loneliness and enormous lifestyle changes.  Being alone in bed those first few nights after placement was painful and lonely beyond words ... and continues to be painful and lonely at times.  Living alone for the first time after more than 45 years of marriage brought incredible sadness.  I felt that I needed to be with my wife every day, so I visited her daily for 4 hours and I also took her out for longer periods a few times each week.  At a certain point, facility social workers, observing my stress, suggested that I not visit so often.  I tried doing that for a week or two, but I missed not seeing my wife so much that I went right back to visiting her daily.

One article I wrote during that time was titled, “An Alzheimer’s Spouse, Married Yet Widowed,” because I truly felt both married and widowed at the same time.  I loved being with my wife each day, even when she no longer knew who I was or that we were married.  But many days were extremely painful.  We would be cuddling on a couch in the facility lounge, I’d tell her that she looked beautiful and how much I loved her, and she’d say to me something like, “Oh, thank you.  You’re such a nice man.”  Or, she’d say, “You’re such a nice lady. I love you too ... but can you please help me find my husband?”  Sometimes I’d say something like, “Honey, guess what?  I found him; I found your husband.  It’s me, Allan ... I’m your husband.”  To which my wife would usually respond with something like, “Oh, that’s nice.  But can you help me find my husband?”  It is absolutely no surprise to me that research finds caregiver stress a high-risk factor for caregiver mortality. 

One person in my own Alzheimer’s support group said that caring for her husband was “grief on the installment plan.”  I couldn’t agree more.  I experienced what psychologists refer to as “anticipatory grief” for so long that I didn’t expect my wife’s death to hit me as hard as it did.  But I was very wrong.  Her death sent me into a period of 3 years of depression followed by another half year of overwhelming sadness.  I have only been able to truly move on with the rest of my life during this past year because I was lucky enough to find that special someone.

 

2. What were some of the most rewarding and challenging moments you encountered in your interactions and relationships? 

The most rewarding moments were those fading moments of clarity with my wife … when she knew who I was, that we were married, and that we loved each other.  We had a “fairy tale” marriage for more than 40 years before she had to deal with AD … she died a month before her 69th birthday, and 2 months before our 49th anniversary.  So those few and far between moments were very special.  But so was every single visit when I knew I was losing her.

The most challenging moments were simply dealing with my emotions each and every day … both when I was with my wife, and when I was home alone.

3. What is one thing you wish people knew about dementia? 

I suppose there are 2 things I wish more people knew about dementia. The first is that it doesn’t only affect the elderly.  My wife’s first symptoms surfaced in her late 50s.  The 2nd thing I’d like people to know is that research funding to find a cure for AD and other forms of dementia should be a much higher priority in many countries, including in the U.S.  For example, our CDC, Centers for Disease Control, consistently lists AD as the 6th leading cause of death in this country, and admits that number of deaths is severely undercounted (a perfect example is my wife’s death certificate which does not list AD as a contributing cause of death) and is probably the 3rd leading cause right behind heart disease and cancer … this year being excepted, of course, since Covid-19 became the 3rd leading cause of death in the U.S. in 2020.  Yet many other diseases causing many fewer deaths regularly receive more federal research funding … despite AD being the only one of the top 10 causes of death with no effective means of prevention, treatment, or cure.

4. Have you ever encountered any stigma or stereotypes surrounding dementia that you would like to dispel?

My wife lost almost all of her friends after she was diagnosed with AD, something that is very common for people with dementia.  Either some people aren’t sure of how to act in the presence of people with AD, or they are scared, or maybe even very ignorant people feel they can “catch” this disease from someone who has it.  Now that I’m writing this, I just may do my own research into why this is so!!   But, for whatever reasons, too often people with dementia lose their friends in a very short time.

5. What advice would you give to others who have a loved one with dementia? 

I recently made a presentation to caregivers that included a handout listing “Ten Steps to Take When the Diagnosis is Alzheimer’s/Dementia.” After my presentation, I posted those 10 steps as a Personal Blog on my website at www.allansvann.blogspot.com.  For more information about each step, please go to my website.

1. Take away the car keys. 

2. Meet with an eldercare attorney. 

3. Meet with a certified financial advisor

4. Discuss long-term care options. 

5. Learn about Alzheimer's and other forms of Dementia at responsible websites.

6. Locate daycare options.

7. Join a good caregiver support group.

8. Check out websites maintained by other caregivers.

9. Travel with your loved one now ... while you still can.

10. Check for possible free respite opportunities for yourself.

 

We would like to sincerely thank Allan for taking the time to share with us his personal experiences and takeaways from his experience as a dementia caregiver. Allan also runs a blog called Reflections of an Alzheimer’s Spouse, and can be found at www.allansvann.blogspot.com