Category Archives: Copyright © 2020

Introducing the DAI Peer to Peer Support Groups

The video below introduces the DAI peer to peer support groups, with members from the weekly Sunday Living Alone Social Support Group. DAI members facilitate and provide online peer-to-peer support groups and social groups for people with dementia.

The DAI peer to peer support groups are run by people with dementia, for people with dementia, and are a meeting place for people diagnosed with all dementias including Alzheimer’s disease and any other type of dementia.

During the current COVID-19 Pandemic, meeting online has been more important than ever before, for everyone, and as it has become the current new normal for communicating, socialising and doing business all around the world. DAI is proud to have been providing online support to its members for since January 1, 2014.

 

Online peer to peer support groups are ideal for those who cannot drive to their local “in person” support group or who live in isolated areas with limited access to services.

Each support group has its own co-hosts, and runs autonomously, to ensure that our groups continue in the case of one person suddenly being unable to manage them due to health changes or a resignation.

DAI also provides peer-to-peer mentoring, if you prefer one to one support, rather than joining a group.

We are occasionally asked if peer-to-peer groups really work; it is clear they do, as well proven by Alcoholics Anonymous (AA) which was founded in 1935 by Bill Wilson and Dr. Robert Smith.

Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

Donating or partnering with us will make a difference to the lives of people with dementia.

Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI here…

Read our regular blogs here…

Discrimination Campaign – COVID19 #WHA73

The International Disability Alliance and the International Disability and Development Consortium have launched a Covid19 Discrimination campaign to call to raise awareness of examples of the discrimination that persons with disabilities experience in accessing services and call on the global community on the critical and urgent need to deliver disability inclusive COVID-19 responses at global, national and local levels.

The issue:

The one billion persons with disabilities are one of the most excluded groups in our society. The World Health Organisation and various other UN agencies are reporting that people with disabilities are being disproportionately affected by COVID-19.

The issue of discrimination is particularly pressing. Evidence suggests that persons with disabilities are among the hardest hit during the COVID-19 pandemic. Dangerous narratives have been emerging that people with disabilities cannot contribute to the response to COVID-19, make their own decisions and most worryingly, that their lives are not considered as worth saving compared to others – in direct contradiction of the UNCRPD and all other human rights instruments.

The Aim:

The campaign will raise awareness of examples of the discrimination that persons with disabilities experience in accessing services (such as health services) during the global pandemic. It will call on the global community on the critical and urgent need to deliver disability inclusive COVID-19 responses at global, national and local levels.

This phase of the campaign will launch to coincide with the World Health Assembly. The public facing elements of the campaign will support the advocacy statement given to the World Health Assembly. The campaign will use the World Health Assembly to highlight the particular barriers persons with disabilities experience accessing health services and why the need to act is so critical and urgent.

Key Campaign Messages:

  • People with disabilities are being disproportionately impacted by the COVID-19 pandemic.
  • Information is not being made available in accessible formats, so persons with disabilities are denied their right to make informed decisions.
  • Negative attitudes mean persons with disabilities are often considered less of a priority to receive critical health care, or their lives seen as worth less than the lives of persons without disabilities.
  • Social distancing may be particularly challenging for persons with disabilities who require support with personal care.

Persons with disabilities are also more likely to live in institutional settings, which have been shown to be an environment where the COVID-19 virus is exacerbated.

Physical buildings (including health facilities, and testing and quarantine centers) are often inaccessible, and reasonable accommodations like interpreters are often not available.
In many situation, COVID-19 health responses have hindered access to other health services for persons with disabilities. Often, these health services are important and lifesaving, such as rehabilitation services and medicine for people with epilepsy.

Women and girls with disabilities face additional barriers to accessing sexual and reproductive health and rights.

World Health Assembly Statement

The Seventy-third of the World Health Assembly will take place in Geneva, Switzerland from 17 – 21 May 2020. The WHA is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board.
The International Disability Alliance (IDA) and International Disability and Development Consortium (IDDC) members have submitted written statements to be considered under provisional agenda item 3 Address by WHO Director-General devoted to the COVID-19 pandemic response in advance of the opening of the Health Assembly.

Access the official statements here.

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Dementia Alliance International, a an organiszation representing the more than 52 million people with dementia, who are all people with acquited disabilities, thanks IDA and IDDC for their continued advocacy to realise the disability rights for us all.

Wally Cox says #Hello

We recently had the pleasure of sitting down with one of our Board members, Wally Cox, to find out more about his experiences as a person living with younger-onset dementia. This interview is part of a new series we are doing at Dementia Alliance International (DAI) that explores the lived experience of people around the world who are living with any type of dementia.

Please donate today to our campaign to help raise funds to provide improved online support and services for our members and their families, who like Wally, all live with and are facing dementia.

This month, we are highlighting Wally’s story in honor of International Day of Families 2020.

Every year, the United Nations supports this worldwide observance on 15 May. The 2020 COVID-19 pandemic is a challenging social and global health crisis which brings into sharp focus the importance of protecting vulnerable individuals and families, as well as fostering greater equality for all.

DAI’s vision is a world where all people are valued and included.

We recognize that dementia affects not only people living with a diagnosis, but their families as well. In times of crisis, it is families who stand together, shelter one another, and care for one another. We applaud Wally and celebrate him as a person living with dementia who shows us the meaning and value of family in times of crisis.

Wally, tell us a little about yourself.

I live in northern California with my wife, Pat. We have three kids and two grandchildren and have been married since the day after Pat graduated from high school.

I was diagnosed with dementia at 62. The doctors have diagnosed me with a few different things including frontotemporal dementia and Alzheimer’s, because they are not quite sure what is going on.

Dementia runs in my family. My grandmother became senile (that’s what they called it back then) when she was in her late seventies. Fast-forward a few years and my dad – who was in his sixties – started exhibiting some odd behaviors and doing things that were seemingly out of character. It wasn’t until he got into his eighties that the doctors said he probably had dementia of some kind. That was about the time that I started having problems. And I also have a brother who has been diagnosed with Lewy body dementia.

Q: What impact has this had on your family, having so many generations of people needing care and people needing to be cared for?

My grandparents lived very simple lives and didn’t have much, so when my grandmother got sick, the burden fell on my parents to help her out. There was no support for my mother when she was caring for my grandmother. Finally, they put her into one of those homes. She was there for a few years, drifted away and then was gone.

My dad is a little bit of a different story because my mother was dealing with him by herself. When he got very hard to deal with, I built a house for him next door to me so they could live separately. They were not rich. They were middle class. Half of my mom’s income went to support my dad, and then she was living on the other half.

Years ago, I had been a caregiver for my wife. She had gotten really, really ill twice. The second time, to the point of death’s door. So when I became sick, we had already learned through experience a lot about being a person who needs care and a lot about being a person who gives care.

Q: What has that transition been like, going from care-provider to care-receiver?

After my wife got sick, I built emotional walls between me and her because I was afraid of having my heart ripped out when she died.

I felt like if I put some distance between us, I could survive losing her.

But through counseling and some really honest conversations, we got through that. In the process, I learned that I didn’t need to build walls. I needed to build connections.

When I got diagnosed with this disease, I became a person who needed care. My first reaction? To build walls again because I was ashamed of what I had.

The day I was diagnosed, she told me that she would never leave me, that she would always be there for me, and that she was with me to the end. Just like I couldn’t cure her, she can’t cure me. But she can be with me and that means a lot.

Q: In your opinion, what can we do as a nation and as a society to support and protect vulnerable people and their families in times of crisis?

I think that in the United States, we have done a pretty poor job as a government and as a society in understanding how to best do this.

The doctor who diagnosed me with dementia relocated to Palo Alto – a rather affluent area. He said that a lot of his patients, upon hearing that their mother or father has dementia, the first words out of their mouth are ‘We have got to find a [care] home for them’. As if they are disposable.

My wife’s aunt and uncle live in Tasmania. She has had a stroke and uses a wheelchair. They have all sorts of help – offered by the government – to help them stay in their home. People bring them meals. They come and help with the garden. They help with her care and get her showered because her husband is quite old – almost 90 – so he can’t do these things. The government has gone to extraordinary lengths to help them continue live in their home, which is actually a lot cheaper than if they had to go live in an elder care home.

The Tasmanian government is measuring success by being able to keep you in your home, and that does not seem to be the theme that we see in the United States.

I think that you’re measured by what you do to the least of you, how you treat the least of you: the most vulnerable, the children, the invalids, and the sick. As a person with dementia, what a lot of people don’t understand is that I still have feelings. I still have intelligence and the ability to relate. I forget things and I don’t always do things right, but I am a human being.

Q: In your experience, how does DAI make a difference in the lives of the families of people living with dementia?

As a support group co-host, I meet lots of new people.  Sometimes they come to our online support groups for a long time and sometimes just for one or two visits. But overall, the one response we have heard from people is that when they leave that meeting and are back with their families, they’re like a whole different person.

When you’re diagnosed with a fatal disease like this, you feel cast asunder and not really anchored to anything. You just kind of float around in the ocean of worry and concerns. Our support groups are a place where you can find rest. You share with your friends and you start looking forward to the next meeting, to the next week. You’ve got something coming up and you want to learn, and people make you laugh.

So, one way that Dementia Alliance International helps families is by helping people with dementia actually become better family members. I know that when I am less fatalistic and less depressed, I am easier to be around.

Also, caregivers get a break during our support group meetings. My wife knows I am occupied for that hour and a half. She gets the chance to do something else besides pay attention to me.

It also allows the caregiver to realize that dementia may not be as gloomy as first thought.

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This month, as we  highlight Wally’s story in honor of the International Day of Families, you can help Dementia Alliance International continue to represent, support and educate people living with dementia, their families, and the wider dementia community by donating to us to support more people like Wally.

In honor of International Day of Families, please show your support by donating today.

International Nurses Day 2020

We celebrate International Nurses Day around the world every year on May 12, which is the anniversary of Florence Nightingale’s birth. DAI also commemorates this important day each year to ensure nurses are honoured and recognised for their work.

Many of our members are retired nurses, and without nurses, many of the services we end up needing would not be available.

The World Health Organisation has also designated 2020 as the International Year of the Nurse and the Midwife, to recognise the important work they do, and the vital role they play in providing health services.

They also celebrated them on International Nurses Day, and DAI also celebrated and honoured nurses on World Health Day.

Today, Dementia Alliance International (DAI) is asking you to make a donation to support our important work, in honour of the many nurses in our organisation, and the work they have continued to do in supporting other so many other people also diagnosed with dementia.

Once a nurse, always a nurse!

Due to the Coronavirus pandemic, our sponsors may not be in a position to commit to further funding this year and beyond… We therefore need your help.

Please donate generously.

Back by popular demand: Montessori Principles to Improve Engagement

Presenters: Dr Cameron Camp & Gary Johnson

This DAI Webinar is back by popular demand, following the recent and very successful April Webinar. It is one event, set in a number of different time zones, and may not be available viewing after the live session.

DAY/DATE(S):

  • Tuesday, May 12, 2020 (USA/CA/UK/EU)
  • Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN)

Register here…

About the Webinar: This DAI “Meeting Of The Minds” Webinar is a repeat of the session we held on 29/30 April. It is a live event, not the recording of the first session, and both presenters will delve more deeply into the topic, and there will be time for Q&A.

These are challenging times and call for innovative methods. Two nursing homes decided to draw upon and apply the teaching and principles of Dr. Maria Montessori. Montessori believed the most important task of a teacher was not to teach but to observe the students and create an environment that encouraged students to teach themselves and each other what they needed to know when they needed to know it. She achieved amazing results! Similarly, amazing results are achieved when her approach is applied to persons living with Dementia, such as a dramatic reduction in drug use to control unpleasant or aggressive behaviours, reduction in staff & resident injuries, and an increase in level of activity of residents.

How powerful it would be if these same principles were applied at the same time to front line staff and those who supervise them. Effectively, this would create a new architecture for workplace culture, making it possible for employees to be the best versions of themselves as often as possible. We will review two case studies from organizations on their successful journey to breathe Montessori Inspired Principles into their organizations. It’s a Human Thing®

About Dr Camp: Dr. Camp gives workshops on designing cognitive and behavioral interventions for dementia internationally. These interventions are all designed to reduce challenging behaviors and increase the level of functioning and quality of life of persons with dementia. He has co-authored three college textbooks and published over 150 peer-reviewed articles and book chapters.

About Gary W. Johnson: Gary’s passion is improving the relationship that happens between frontline staff and their leaders. He has served as a Vice President of Operations for a large CCRC in central Pennsylvania. Gary is a licensed nursing home administrator. He has served on numerous boards and presented at regional and national conferences. He also served as adjunct faculty for Temple University. He is skilled at creating healthy teams, cultures and operational efficiencies. Gary has the unique ability to see to the heart of things and help people to be the best versions of themselves.

Tuesday, May 12, 2020 (USA/CA/UK/EU):
  • 11:00 am Honolulu
  • 2:00 pm Pacific
  • 3:00 pm Mountain
  • 4:00 pm Central
  • 5:00 pm Eastern
  • 10:00 pm London/Glasgow/Dublin UK
  • 11:00 pm Paris, Munich, Amsterdam, EU
Wednesday, May 13, 2020 (AU/NZ/JP/SGP/TWN/CHN):
  • 6:30 am Adelaide AU
  • 7:00 am Sydney/Melbourne/Canberra/Tas/Brisbane, AU AU
  • 5:00 am Perth AU/Taipei//Beijing
  • 9:00 am Auckland, NZ

The Webinar runs for 1.5 hours.  
Check your time if not listed above with this link.

COST TO ATTEND:

  • DAI Members: FREE
  • Care partners: FREE
  • HEALTH CARE PROFESSIONALS: FREE
  • DONATION TO ATTEND: $50.00 USD

Register here…

DONATIONS APPRECIATED

PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE MEMBER OR STRATEGIC PARTNER.  

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

Support people with dementia: Donate to DAI
Become a DAI Associate or Strategic Partner today
Volunteer for DAI

WITHOUT YOUR SUPPORT, DAI CANNOT PROVIDE THE FREE SERVICES CURRENTLY PROVIDED FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

THANK YOU

World Health Day 2020: DAI Honours all nurses

It was World Health Day on 7 April 2020, and we celebrated the work of our nurses and midwives by reminding everyone of the critical role they play in keeping the world healthy. Nurses and other health care professionals (HCPs) are at the forefront of the COVID-19 response.

Frankly, without nurses, there would be no response to the COVID pandemic; without them, our lives would not be as safe.

Many DAI members were also qualified nurses or health care professionals, and although they cannot contribute to the current health crisis as nurses, due to having retired, their work has continued on through DAI.

Determination, service to others, empathy and compassion are the trademarks of all nurses. DAI salutes and thanks you.

Below we have shared some of the stories of a number of retired nurses wo are also members of DAI, not only to help raise awareness of the work done by nurses and midwives, but to raise awareness of the important work done by members of Dementia Alliance International (DAI).

Please support our work at this important time.

Listen to DAI Chair, CEO and co founder Kate Swaffer, on being a nurse, volunteering for DAI, and why we need your support.

Image source: Kate Swaffer © 1987

By Kate Swaffer: As a proud retired nurse, who has worked in aged and dementia care, and then operating theatres, it is heartbreaking to see just how hard our nurses are working globally to support the whole world through the COVID-19 pandemic, and this is too often without adequate infection control measures available to keep THEM safe.

Many people with dementia who take on leadership roles in DAI were also nurses or other health care professionals. It seems to be innately who ‘we’ are: helping others. In my life as a nurse and also a volunteer, which I have been doing since my early teens, DAI is the most important volunteer role I have ever undertaken.

Although I work at least as many hours every week as most other CEO’s, very often more, but without the same funding or respect as them, it is truly worthwhile leading an organisation that is so proactively working to support others with dementia to live more positively, and to advocate for human rights and disability rights.

But DAI needs your help. Without donations or partnerships, DAI could not continue, as we are not a well funded organisation; on top of that, we  still have no paid staff.

Image source: Maria Turner © 2020

By Maria Turner: “Apart from my family, my nursing career was everything to me, and I was devastated having to give it up. I had to retire from my work as a registered nurse after 30 years, and although I had spent my life taking care of others, mostly in a critical care environment, and I am determined to not let my diagnosis change that. I have always been passionate about volunteering ever since I was 8 years old, and am still actively volunteering for the American Red Cross and for Dementia Alliance International.

Although I was diagnosed with FTD in 2016 at the age of 48 and with ALS shortly thereafter, I do live a full and positive life. I host weekly peer-to-peer support groups all over the world for DAI, and I am determined to help those who currently may not have as many resources as those of us who are attending this conference this week.

DAI and I want to see a stronger and more inclusive community by reaching out to those who are recently diagnosed so that we can emphasize the fact that we must plan for and be excited about our own futures even after a diagnosis.

If I can just walk alongside one person and prevent them from having to walk this path alone, I will know that I had a part in breaking down barriers and helping end the stigma a dementia diagnosis can and will bring.

  • Do not ever let dementia define you.
  • Life doesn’t end with a dementia diagnosis, a new life begins.

Maria’s son Rhys also said: ‘Through DAI, mum has been able to fulfill her goal of helping others by giving her a platform to talk to the newly diagnosed. Her responsibilities as a board member keep her sharp and focused. Peers have taken the place of her patients, and through the support groups, she is still helping so many other people.

This is in fact, why it is so important for people with dementia who were nurses to consider volunteering; whether it is at their local Red Cross or Church, or an organisation such as DAI.

It’s not just important it’s the fibre of our very beings.”

(includes excerpts from a speech given by Maria and Rhys at the ADI conference Chicago: Mother and Son)

Image source: Phyllis Fehr © 2020

By Phyllis Fehr: “As a person living with Alzhiemers and a former Intensive Care Unite (I.C.U.)  Nurse, I have always felt that this was a hidden and never talked about disease. When I was diagnosed I felt it was my new lease on life to change this so that other people living with dementia didn’t have to hide that they could have a voice and that we have support in each other.

During this time of COVID-19 it is never been more apparent to me that we need extra support. We all know what isolation feels like and to have this added burden of having to be isolated and not leave the house it’s very difficult, it’s a different kind of isolation. So I felt it highly important that we try and help people Living with Alzheimer’s and dementia to not feel so isolated, not feel so alone and to feel supported.

In my years of being a D.A.I. member the camaraderie and learning experiences that we have amongst us is absolutely phenomenal it helps me to get through my day-to-day life.

D.A.I. offers online peer to peer support groups. We learn from each other, we learn how to cope with the day-to-day challenges of living with dementia. We help each other to stay uplifted, we support each other in times of need and there’s no bigger need them at the present. So D.A.I. chose to add extra support groups during this time.  I think it’s been wonderful rather than having a once a week meeting we get together twice a week.

We help each other by saying what we’re doing to cope, so that others see that there still are ways to see your grandchildren even though they’re not in front of you. We discussed ways of helping us deal with our stress and anxiety over all of what’s happening and without these groups I don’t know if I personally  would be able to cope.

With my nursing background I know what is going on, I know how sick people are and I fear for other people who may get this disease. I also know that people with any type of dementia including Alzheimer’s are more vulnerable at this time and worry about getting this disease, so if we get any form of illness we all decline a little bit more and we’re all worried that if we get this where would we be.”

Image souce: Agnes Houston

By Agnes Houston: “I feel I was given a diagnosis and could either sink into the corner and be ‘done to’ or take control of my life. I feel like I am leaving a legacy for others so they can stand up and be a citizen, not a victim.” (extract from an interview for Elder Magazine, Seizing control of dementia)

Image source: Tracey Shorthouse

By Tracey Shorthouse: “Tracey, a retired nurse, was diagnosed with early-onset dementia and posterior cortical atrophy (PCA) when she was in her mid-forties. Tracey is determined to keep her mind and her body active during the coronavirus pandemic with a variety of activities and hobbies at home…. In the old days, when I was a nurse, I used to use Davina McCall’s workout DVDs in a way to keep fit. She really inspired me. And I have started to do that again as it’s so important to keep my body moving.” (extract from the Alzheimers Society UK blog, ‘Life during lockdown’)

It is indeed important to keep moving at this time, and we recommend you contact your local gymnasiums, exercise physiologists, pilates or yoga instructors or other providers including physiotherapists, and ask if they have online group. Many are currently providing online telehealth visits like this for free.

Thank you for honouring nurses and midwives with us, and for your support.

We sincerely hope you will support DAI by donating or partnering with us. Thank you.

A story of Walls, Connections & Merry-go-rounds, by Wally Cox

Wally Cox, who is a DAI Board member and peer to per support co-host presented this video presentation at our recent Café Le Brain.

This moving story of love, and his role as a care partner for is wife, and then the transiton from husband and care partner, to himself needing care and support since his own diagnosis of dementia.

“There is no greater agony than bearing an untold story” (Maya Angelou).

This is Wally and Pat’s story.

A story of Walls, Connections & Merry-go-rounds.

By Wally Cox

Being a good care partner is not easy. That is a lesson I learned. 

Pat and I first started dating when we were teens. Determined to get married, we announced to both sets of parents, “We are getting married next Saturday and we sure would like you to come.” I assured them that I had a job that paid 50 cents an hour over minimum wage, an apartment, $75 in the bank, a brand new water couch in the living room (Hey, it was, after all, the 70’s), and my ’65 VW bus was paid for, free and clear – so there! But imagine, they did not share our excitement. In fact, it was quite the opposite. Undoubtedly it was because we were marrying the day after Pat graduation from high school. But we were in love, did get married, and created a wonderful life together, raising three kids. Things were going great until we were blindsided.

It was 1994 when Pat had first become ill. She needed me. And indeed as a doting husband, I undertook all the mechanical aspects of her care. I took her to the best doctors, I made sure she had nutritious food to eat, I helped with medications to ease her pain, and I researched symptoms at the library. However, my emotional response became embroiled in frustration, fear, and self-preservation. When she needed me to sit with her, hold her hand, look into her eyes and tell her I loved her, I became distant, detached, and unavailable… I had gained so much knowledge with so little wisdom.

Sinking in the midst of my own crisis, I didn’t understand why this disconnect was happening. I reached out to a counselor and learned that I was exhibiting a common behavior. Through counseling, I learned that I was defending myself against loss. I had made this all about me instead of all about us.

You see, I was building a wall, stone by stone, of emotional detachment. I was creating a distance between us that had never been present before.

I was hardening my heart so if Pat did not survive, it would not hurt as much. Heroes run into danger and trouble to help those in need. But in my fear, I chose to turn away. I didn’t leave, but I disconnected, building a wall to shield myself from the heartache that was coming.

So much for being a hero in time of need.

In order to break down this wall, I had to take a risk and become vulnerable. I had to let Pat into the darkness of my pain and thoughts:

  • What would I do if she didn’t survive?
  • What would become of our family?
  • Would I ever find love again?
  • And if I did, would that be a betrayal?
  • Could she forgive me for my selfish reaction in the midst of her crisis?

Together, and with professional help, we worked out these issues and built an even stronger bond than we had imagined possible. My fears were normal, our love enduring, our connection complete, the wall demolished.

Lesson learned.

It was seven years later that Pat battled her illness once again, this time ending up in the ICU in grave condition. The doctors told me she could not survive and to call our children home to say their goodbyes. While this was a very difficult time in our lives and as hard as that was to hear, I knew this time I did my very best to stay connected to her – heart to heart – through this second bout of her illness. She and I were prepared, as well as anyone could be, to see our journey together through to the end. I was determined to be the best care partner – both physically and emotionally – a husband could be.

Well, God had His plan for us and our future. It was a miracle Pat survived, and it was a miracle that I had become the husband and care partner she needed.

Walls…

Walls – so good at keeping things out, and so good at keeping things in.

I learned so much through this journey about being a care partner. So, imagine my surprise when I found myself building walls yet again, but now I was on the other side of the scenario as a person who needed and still needs care.

It was at work that I first noticed something was amiss. Sometimes, I didn’t recognize clients whom I had seen just the previous day, computer icons didn’t make sense, and I would repeat questions I had just asked. Simple tasks were no longer so simple. Finally, one day a client who was clearly exasperated by my pacing and confusion asked me, “What are you.. stupid??”  Wow! That hurt! No, I thought, not stupid, but something definitely was wrong.

I was only 60 years old, I had built a successful insurance practice, and yet tasks that I had previously done practically on autopilot suddenly became almost impossible to complete.

My doctor sent me for a neurological workup, where I was given the diagnosis of Mild Cognitive Impairment with the instructions to go on home and return in one year. Boy, it sure didn’t seem so MILD to me. During that year, I made more and more mistakes at work, I was having trouble with decisions at home, and I started feeling awkward in social situations.  Worst of all, I no longer trusted my own judgement.

At my next neurology appointment, I was given the diagnosis of Alzheimer’s Disease. Three generations of dementia: my grandmother, my father, and now me.

I left the job I loved, resigned as a school board member, and quit almost all social functions. After resigning from the school board, I received a call from the local newspaper requesting an interview to discuss the resignation. Instead of taking advantage of this perfect opportunity to speak about Alzheimer’s Disease, I just told the reporter I was ill and I didn’t want to talk about it. When he persisted for more information, I pleaded with him to just leave me alone. Yes, once again I was building my wall.

There I was, isolated by my own choice, hiding from my illness, afraid what others would think. I went into hiding behind my wall… and why?… because of the stigma and fear I felt of having Alzheimer’s.

In the book “Why Many People Abandon Friends and Family with Dementia – and Shouldn’t”, the author states that dementia today is treated like cancer was in the 50’s and 60’s, spoken of in whispers and sometimes kept from its sufferers. You know, like “Aunt Phyllis has the Big C but we are not telling her. Shhhhhhh….. Well now, I had the Big D, Shhhhhhhhh… don’t tell anybody.

 Pat recognized what I was doing and helped me knock that wall down. She found the Alzheimer’s Association in Santa Rosa and signed us up for the Early Stage Support Group. I had my doubts about this group. She signed me up for a support group online with DAI, Dementia Alliance International, a forum run by, and for, those of us with dementia. I had my doubts about this as well.

But I was surprised to discover people talking about dementia openly, unashamedly, and without apology. Counselors, care partners, and people who needed care helped me see that my life still had purpose… hope… which I was missing. I learned again to tear down my wall.

Walls… only the first lesson…

And then Pat and I had to move on to the second lesson…

The Merry-Go-Round.

When I was a motorcycle riding safety instructor, one of the most important lessons I taught was, “Look where you want to go.” You see, we naturally veer in the direction we are looking. I would instruct new riders to pick the best path to follow and aim for it. Don’t focus on the things you want to avoid, the tree, the rocks, the potholes. Look in the direction you want to go. The same is true when facing an illness.

When I was diagnosed, our family doctor told my wife and me to go home and “get our affairs in order.” What did that mean to me? How did I respond? Well, at first, all I could focus on were the depths of the diagnosis, losing myself one bit at a time and all that entailed.

It was as if I was on a merry-go-round, standing on the outside edge as it was spinning around, staring resolutely at the center pole where I saw my future – the big D’s – Dementia, Despair, Depression, Disappointment, Death. I found myself not being able to see anything else, whirling in circles, becoming ill from worry, stress and concerns.

Yet, meanwhile, as I focused on the center of the merry-go-round, behind and surrounding me were all the good things that I would have seen if I had just turned around and looked out instead of in. I was looking at the tree, the rock, the pothole – my Alzheimer’s dementia.

I needed to look outward from this merry-go-round, to see another path, the rest of my world — filled with faith, family, friends, music, love, adventures, art. I needed to recognize that I am more than my diagnosis, that I am more than my illness. Yes, there are things I truly cannot do, but there are many things I can. That is the path I have chosen.

Pat and I have started traveling in our RV, seeing new places and making new friends. I started expanding my interest in art, with my sketching and watercolors. I do more of the things I can to help in our daily lives, and Pat does more of the things she must. But it works.

So where are you and your loved one on the merry-go-round? Are you staring inward at what cannot be controlled or outward to what is possible?

So where are you with your emotional walls? Are you building up, or are you tearing down?

Emotional walls – merry-go-rounds- these are two things that do affect how we wake up in the morning; they do affect how we go through our day; they do affect how we relate to other people; and they do affect how we appreciate the things we have.

We need to recognize and work toward building connections, slaying fear and opening our hearts, having a spirit of gratitude. This is a daily choice.

We need to recognize that the merry-go-round of life is always there. But while we are alive, we can still choose to look in or to look out. This is a daily choice.

The choice for Pat and me is to love, live, laugh, and connect.  What do you choose?

 

        

 

 

 

World Alzheimer’s Report 2020: Opportunity to contribute

Invitation from Professor Richard Fleming to contribute to the writing of the Alzheimer’s Disease International (ADI) World Alzheimer’s Report 2020

Every year Alzheimer’s Disease International (ADI) commission a major report. Last year the report focused on attitudes to dementia (https://www.alz.co.uk/research/world-report-2019 ) and the London School of Economics produced a groundbreaking overview of the stigmatization of people living with dementia.

This year ADI have commissioned Professor Richard Fleming to lead a team of experts in writing the World Alzheimer’s Report 2020 which will focus on Dementia and the Built Environment, looking at progress to date, best practice and innovation across home/domestic settings, day and residential care, hospitals and public buildings and spaces. The report will have a global perspective of dementia related design that takes a cross cultural approach, reflects regional and economic differences and low- middle- and high- income countries, and will consider urban versus rural settings. It will highlight the role of innovation, entrepreneurship and the importance of aesthetics.

Professor Fleming is committed to ensuring that the voices of people living with dementia are heard in this report. With the assistance of Dementia Alliance International (DAI) he is asking people living with dementia to nominate day care centres, residential care facilities, hospital units or public buildings that they feel provide them with a supportive and accessible environment. He is hopeful that the managers of these buildings will collaborate with a survey that will provide information for a case study that will appear in the report.

Professor Fleming is also asking people living with dementia to complete a brief survey about how they have modified their home to suit their needs. The involvement of DAI in this will provide a global snap shot of home modifications that is sure to stimulate discussion and the sharing of ideas on how to thrive at home. Below is the letter of invitation to participate from Professor Fleming.

Dementia and the Built Environment

I am very pleased to say that Dementia Alliance International is assisting me with the writing of the World Alzheimer Report 2020 on dementia related design of the built environment. Kate Swaffer is working closely with me on this project and we would like to invite you to contribute to it by identifying one or two buildings that you have found to be designed in a way that meets your needs.

I would like to invite you to nominate a residential aged care building, a day care centre, hospital, hospital ward or public building that, in your experience, has been very well designed to meet the needs of people with dementia.

Survey 1: If you are willing to do this please go to the survey link – https://www.surveymonkey.com/r/DAI_buildings   and answer the questions there.

We would also like to invite you to contribute to it by describing any changes that you have made to your own home to make it more suitable for you.

Survey 2: If you would like to describe the changes that you have made will you please go to the survey and answer the questions there https://www.surveymonkey.com/r/DAI_Home .

The survey will also give you an opportunity to send some photographs to show the changes you have made.

I completely understand that you may not want to take part in this survey and I thank you for your attention so far. If you do choose to complete the survey please accept my thanks. I hope you find it interesting.

Yours sincerely

Professor Richard Fleming, PhD.
Lead author, World Alzheimer’s Report 2020

Supporting people with dementia through COVID-19

This DAI infographic provides an easy reference to support for people with dementia globally.

During the current COVID-19 pandemic, members of DAI and almost all others are rightfully extremely worried about the impact on their day to day lives of this outbreak, including being able to shop in their communities for the most basic of supplies.

In most countries cinemas, almost all essential services such as restaurants, conference venues, hairdressers, beauty therapists and nail salons have been ordered to close. Physical distancing measures are in place (commonly referred to as social distancing), In some countries, no more than two people can meet in any one group, and they must be 1.5 metres apart.

DAI is providing additional support to DAI members at this difficult time by hosting a number of extra support groups, reported on recently.

If you have demenetia, or know someone who does, please refer them to DAI, or to their local or national Alzheimer’s organisation, as many are also now providing online support.

These are extraordinary and extremely stressful and upsetting times for most people, perhaps especially older persons and marginalised groups such as people with dementia, and the information  below may be of interest.

It is a challenging time for everyone, and enhances why access to clear, accurate, and up-to-date information is essential.

Alzheimer’ Disease International (ADI)

ADI has recently published a position paper on COVID-19 with members of their Medical and Scientific Panel, which as their strategic partner, our Chair Kate Swaffer was asked to contribute as an author, and provide a quote. The global impact of COVID-19 is unprecedented, particularly on vulnerable groups such as people living with dementia and their families and caregivers. We hope that by sharing such information, we can assist persons and families in making informed decisions about how, when and where to seek help at this difficult time. You can read the full article here…

Within the article, several important topics are addressed:

  • Is COVID19 different for people with dementia?
  • Different countries’ guidance on how and when to seek further treatment
  • Difficult decisions around hospital admission and triage
  • Other information on COVID prevention and treatment and additional challenges to consider for people living withdementia
The World Health Organisaton (WHO):

The WHO provides daily updates and many other resources – https://www.who.int/emergencies/diseases/novel-coronavirus-2019 and including a very recently released publication for children – https://www.who.int/news-room/detail/09-04-2020-children-s-story-book-released-to-help-children-and-young-people-cope-with-covid-19

The following is a précis of recently received information from the WHO Working Group webinar on COVID-19 and Non Communicable Diseases (NCDs) webinar:

The United Nations three strategic priorities:
  1. Contain the spread of the COVID-19 pandemic and decrease morbidity and mortality (WHO SPRP/2)
  2. Decrease the deterioration of human assets and rights, social cohesion and livelihoods
  3. Protect, assistant and advocate for refugees, internally displaced people, migrants and host communities particularly vulnerable to the pandemic.
The WHOs three strategic priorities:
  1. Rapidly establishing international coordination and operational support
  2. Scaling up country readiness and response operations
  3. Accelerating priority research and innovation.

Links between COVID-19 and other Non-Communicable Diseases What we know so far:

  • People of all ages can be infected by COVID-19.
  • The risk of becoming severely ill with the virus appears to increase for people who are 60+.
  • People living with NCDs also appear to be more vulnerable to becoming severely ill with the virus, in particular people living with:
  • Cardiovascular disease (e.g. hypertension, persons who have had, or are at risk for, a heart attack or stroke)
  • Chronic respiratory disease (e.g. COPD)
  • Diabetes
  • Cancer
  • Smokers are likely to be more vulnerable to COVID-19

The International Disability Alliance (IDA) is providing many updates to the disability community, as well as hosting webinars and live Facebook chats. DAI has regular opportunities through the IDA to contribute to policy and publications about disability to ensure people with dementia are included.

Many other orgnaisations are hosting webinars and live Facebook chats; listing them here is difficult as there are simpy too many, and new opportunitiues from different organisations and individuals are emerign every day.

Please contact us if we can assist in any way.

What we can’t do alone, we can do together.

Extra support during COVID-19

 

 

 

In these extraordinary times as we are all facing the collective global challenges of the COVID-19 pandemic, we are united in the sense that no matter where we are in the world, we are being asked to minimise physical contact with everyone, and to support each other.

Thankfully technology is on our side, and people with dementia have been using it for many years to maintain or develop new friendships.  DAI has existed entirely due to zoom, for all communications and meetings, so most of our members are used to it.

DAI is delighted to be able to share with you a number of additional peer to peer support groups which have been set up to support our members during COVID-19.

Although isolation and distancing is something many people with dementia experience once they share the news of their diagnosis, it has increased, and the basics of living have been made more difficult. Things such as shoppng, visiting family,  attending a local advocacy or support group, all have been impacted by the restrictions that have been imposed on all members of the community.

An updated list of the DAI peer to peer support groups

Note: If you are not already in a DAI support group and wish to join one, please contact us at [email protected]

Weekly peer to peer support groups:

  • Mondays 1:30 PM CSTNEW GROUP – co hosts Christine Thelker, Phyllis Fehr and Kate Swaffer, US/CA
  • Mondays 10:00 AM ACST – co-hosts Eileen Taylor & Kate Swaffer, AU/NZ/SG
  • Mondays 9:00 AM GMC – co-hosts James McKillop & Dennis Frost, UK/EU/SA/AU
  • Wednesdays 1:30 PM ACST – co-hosts Bobby Redman and Kate Swaffer (Back up hosts: Alister Robertson, Cheryl Day & Eileen Taylor), AU/NZ/SG
  • Thursdays 1:00 PM CDT – co-hosts John Sandblom & Wally Cox, USA/CA
  • Thursdays 3:00 PM CDT – co-hosts Sid Yidowitch, Dallas Dixon & Kate Swaffer, USA/CA/AU
  • Fridays 2pm ACST – NEW GROUP – co hosts Kate Swaffer and Eileen Taylor, AU/NZ/SG
  • Fridays 2:30 PM CDT – co-hosts Christine Thelker & Diane Blackwelder, USA/CA

Living Alone Social Support Groups

  • Sundays 5 PM GMC, co-hosts David Paulson & Julie Hayden, USA/CA/UK, weekly
  • Sundays 5 PM AEST, co hosts Bobby Redman & Jo Browne, AU/NZ,  NEW – now being hosted weekly

If you are not already in a DAI support group and wish to join, please contact us at [email protected]

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Tackling COVID-19: New Platforms and Resources

The World Health Organisation

The World Health Organisation provides daily updates on COVID-19, information on protectign yourself, data, technical advice and much more for us all to stay informed.

They also provide guidance on mental health and psychosocial support for health workers, managers of health facilities, people who are looking after children, older adults, people in isolation and members of the public more generally.

Please find below a list of materials already published.

Please send any feedback on these materials and suggestions for other materials that would be helpful to you during this outbreak to [email protected]

The Organisation for Economic Co-operation and Development (OECD)

As part of the OECD’s response to this crisis, they have launched a platform that provides timely and comprehensive information on policy responses in countries around the world, together with OECD advice, in some cases.

Alzheimer’s Disease International (ADI)

Alzheimer’s Disease International (ADI) is bringing together news, resources, stories, advice and support for anyone affected by dementia around the world, dedicated to resources relating to the COVID-19 pandemic. If you have information or resources you would like them to share, please contact them.

Dementia Australia (DA)

In a coronavirus (COVID-19) update from Dementia Australia, they reported that Dementia Australia will be modifying the way they approach their service delivery and activity . They have however produced a number of very useful resources to spport us all during COVID-19:

Tips for people living with dementia
Tips for carers, families and friends of people living with dementia
Tips for residential care providers
Tips for home care providers

LTC Responses to COVID-19: International Long Term Care Policy Network

Resources to support community and institutional Long-Term Care responses to COVID-19. This website has been assembled by a hopefully growing team of volunteers working on Long-Term Care research, to provide a space to bring together all those really useful resources we were spotting on Twitter. Please join if you can. Adelina Comas-Herrera (@adelinacohe).

Please feel free to contact us if you have other information or sites for us to consider sharing.