Category Archives: Dementia

Phyllis Fehr at the NCD Alliance Workshop: “Our Views Our Voices”

Dementia Alliance International (DAI) board member and ODAG Human Rights Advisor Mrs Phyllis Fehr represents DAI at the NCD Alliance Our Views, Our Voices workshop. This workshop has brought together people living with NCDs from across the world. The objectives are to:

  • Share the Our Views, Our Voices consultation results with participants
  • Contribute to finalising the Advocacy Agenda of People living with NCDs
  • Explore notions of community identity among people living with NCDs
  • Articulate the vision of the Advocacy Agenda
  • Discuss how to implement the Advocacy Agenda of People Living with NCDs

The workshop will result in the finalizing of the Advocacy Agenda of People Living with NCDs which will be launched at the Global NCD Alliance Forum. It will also serve to cultivate a group of people living with NCDs that will go on to champion the Our Views, Our Voices initiative.

Representing DAI, Phyllis was invited to present as part of the second workshop on Day one, on social justice. This is her speech:

Thank you for this invitation to speak today, representing Dementia Alliance International, whose members are formally diagnosed with dementia representing 44 countries.

It is also an honour to be here to represent the estimated 50 million people living in the world living with dementia, also listed as a Non Communicable Disease. We know there are a lot more people without a diagnosis, too often one they do not want, often because of stigma and social justice related issues. 

When I was 48 when I started noticing signs of dementia, but it took until I was 53 to get a formal diagnosis. Once I received this diagnosis I was told to go home, get my affairs in order and try to enjoy the time I have left.

I did this at first but it wasn’t good enough for me either. I still had my intelligence, I still had all my nursing knowledge, I felt I could use this to help others living with dementia and I initially did do this in Ontario Canada. I sit on the Ontario Dementia Advisory Group (ODAG), and am one of four co founders, as well as their human rights advisor. We are a group of people living with dementia advocating for policy change and social justice.

I also found Dementia Alliance International and joined them, and am now an active board member.

DAI was exactly what I was looking for. They are global, and they are the voice OF people with dementia. Kate Swaffer spoke at the WHO First Ministerial Conference on Dementia in March 2015, and placed human rights and disability rights onto the global stage. Many people with dementia are now actively working individually and collectively towards claiming them!

I have attended meetings in Geneva twice this year, once to speak at the opening of the 17th session on the Charter of Rights for People with Disabilities (CRPD) representing DAI. The next time as part of the civil delegation when Canada presented on their human rights issues for people with dementia. In their report back to Canada dementia was mentioned, which I believe was the first time that this is ever happened. This has given me further drive to stand up for people’s rights from a human right’s perspective.

We know the people with dementia are stigmatized in many different ways so they hide away to avoid that stigma. If we look back to the 60s people were with dementia were told to go home and that is what they did.

Let’s jump ahead to round the year 2000 when my mother was diagnosed with dementia; she too was advised to go home get your affairs in order. My mother hid her diagnosis for many years but at this time they were still very little they could do for people with dementia. In the end my mother ended up in a nursing home because of her diagnosis she was most times left in a chair and wasn’t included in anything.

But it is still happening today!

I too was given the same advice but because of my intelligence and my nursing background I refused to take it. Kate Swaffer has termed this Prescribed Disengagement®; it happened to her, and it is still happening to people being diagnosed today.

I’m going to stand up and fight this because there’s has to be a better way. When we consider the continuing breach of human rights for people with dementia, there is no other choice. For example, in Canada one of the provinces has decided and is taking it to the supreme justice in the province, to have it made into law that people with dementia cannot make decisions on their own due to their disease. This is wrong, as it contravenes our human rights; people with dementia do not instantly lose capacity to make decisions for themselves at the time of diagnosis. It is a violation of the human rights and the CRPD. So we are fighting this in Canada and will have to wait to see what happens because if they do make it a law then we will be going to court and fighting this as a human rights violation.

In the early stages of dementia we are able to do things, but we need support for the disabilities caused by the symptoms of dementia to find different ways to support us to live with dementia, not only to die from it.

We need supports that currently are not offered. Things are finally starting to change for people with dementia around the world you may ask why this is happening. This is happening because of people like the late Dr Richard Taylor and DAI’s Chair Kate Swaffer and many other persons living with dementia standing up to the social norms and challenging them. I hope by being here today I have been able to instill a little bit of knowledge on you about what people with dementia are going through. If you have any questions I am more than willing to answer them, if we have no time then please come up to me during one of our breaks I am open to talking to anybody about this disease process.

In closing I want to give you an analogy received from Brenda Avadian of The Caregiver’s Voice. She said as one [Phyllis Fehr] who lives with a non-communicable disease –dementia –

We’re doing all we can to raise awareness worldwide and make dementia “communicable” by finding strength in working together and sharing our stories for advocacy.

This struck a chord with me. People are still not made aware of it and I fully believe that the more it is spoken about, and the more we fight for our human rights, the better off people living with dementia will be. Thank you.

DAI’s Chair & CEO Kate Swaffer will be following up this as she has been invited to attend the Global NCD Alliance Forum on 9-11th December in Sharjah UAE, “Stepping up the pace on NCDs; making 2018 count.” where the Advocacy Agenda of People living with NCDs will be launched and where the NCD Alliance will be mobilising NCD civil society community and bringing together approximately 300 people to discuss  I am looking forward to seeing you in Sharjah, UAE.

Dementia: the impact on families

This week, we are publishing an article written by one of our USA members, Davida Sassler, who shares her experiences of Lewy Body Dementia and the imapct it has had on her own life and family. It is a courageous blog, and highlights the myths and stigma so many of us still experience when diangsed, especially from our own family and friends. Not only does the health care sector need better education, the community needs it too, and much more than awareness raising through the use of the discourse of tragedy and suffering, as that keeps too many of the myths alive.

People with dementia can, and are living positively with it. This is happening all aropund the world, and we are individually and collectively trying to get rid of the myths and fear of dementia. All we ask is that you see the person, not the dementia, and help us to live in spite of dementia by supporting us to maintain independent lives with disability and other support.

In fact, we simply ask our families and friends to open their hearts, and offer us the same love and support they would if we had been diagnosed with cancer instead of dementia.

Grandchildren and Dementia

By Davida Sassler © 2017

When I was diagnosed first with Alzheimer’s last December and later updated with Lewy Body Dementia diagnosis, I never imagined at 51 years old in the early stage that anyone would consider me a threat to my two grandchildren – Isaac 3 years old and Hannah 2 years old. Yes, I hallucinate and can be forgetful especially if not on my medication, but I never considered myself a threat.

Over the last year my son and his wife had separated due to her wishing to be with another man, it has been difficult on my son and grandchildren. Currently, my former daughter in law has decided that she wants sole custody of the children and has literally thrown me under the bus on her pursuit of taking the children away from their father. I along with my partially blind ex-husband are claimed to be dangerous and unfit to be around the grandchildren.

My son has spoken with his lawyer and our best recourse of action is to submit a letter from our doctors stating otherwise for the judge. I have spoken with my neurologist’s office and he has no problem supporting me. He feels that there is no reason for the children to be withheld from me.

This recent issue has made me consider growing up as a great grandchild, grandchild and as an adult a daughter of someone with Dementia. My great grandfather Ivo had Parkinson’s disease and later developed Dementia. As a child, I did not understand why my great grandfather would go from normal to completely confused or even angry at times which was not the man that I grew up around. He was never threatening to me or anyone else, he just seemed confused and frustrated.

Later as an adult, I had to deal with my grandmother Katheran who was Ivo’s daughter who had Alzheimer’s. She did her best to hide it from everyone. Most times, she didn’t speak just nod yes and smile. Eventually, she was misplacing everything and was wondering the neighborhood at 3 AM in the morning knocking on the neighbor’s doors. This convinced us that she was in serious trouble. At no time, did I ever prevent her from seeing my children. It took some explaining to them even in their teen years as to why she was acting so strangely.

Eventually, my father started having issues with confusion and hallucinations. At first his doctors claimed Alzheimer’s but he absolutely would not accept their diagnosis. He called them quacks and refused all medication. He knew his symptoms did not match what he was experiencing and blamed it on his dyslexia as he aged. As he continued, things only became worse. He was angry on a regular basis and soon forgot words. At moderate to late stage, my stepmom was able to finally get him on medication and to other doctors who diagnosed him with Lewy Body Dementia.

My father had always been a very strong man with an outspoken demeanor. It was difficult on my children to see him become childlike and unable to hold a simple conversation. At this point, both my kids were adults and my grandson Isaac had been born. Never did any of us consider keeping Isaac away from my dad because we knew on some level that he understood this was his great grandchild.

Dementia is a lonely place. I could see it in my family member’s faces and now I am experiencing it firsthand. I would never wish this on my worst enemy. People want to shun folks with dementia. I saw how they reacted when we would take my dad out to dinner at a restaurant. Everyone seemed uncomfortable around him and his simple ways. I guess it is easier to send someone away and out of sight than to acknowledge that they are suffering dementia.

Remembering how my family members were treated, made it difficult for me to admit to anyone outside of my family that I had Dementia. I did not want to be treated different. I still feel like me most days. The days that I am confused treating me differently only makes me angrier. I was literally fuming over the litigation papers trying to bar me from my grandchildren. No, I don’t know how long that I can remain in the early stage but I intend to fight to remain here as long as possible. During this time, I want my life to be as normal as I can be. I want to be around other people, friends, and family but do not want to be treated as a child or like I am made of glass.

A 100 years ago, crazy people were left in attics or sent to asylums to be hidden away because everyone was so ashamed to be around them. Now they openly shop at Walmart and pose as Walmartians. I even recently saw a video taken of a young woman with two different shoes (a flat and a high heel) dragging a raw roasting chicken along on a leash to the bus. Crazy is now celebrated and paraded about fully in society.

Unfortunately, society does not have the same tolerance for Dementia patients. If you are early stage, most folks don’t believe that you are sick and if you are far enough along to doubt the dementia, they prefer that you aren’t around them. They are no better than public lepers. All we can do is fight to dispel the myths of dementia. Educate the ones who refuse to see this as a disease like any other including Cancer. We are no different just a different type of disease except unlike Cancer, we have no current hope of a cure. It is a disease that was considered only for the old and infirmed not people like me who are still relatively young at 51 years old.

We must speak out and we must fight for our rights as long as we can.

Thank you Davida for sharing your story.

“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.

World Alzheimer’s Month 2017

As most people who follow this blog will know it is now World Alzheimer’s Month 2017 #WAM2017. Each September we make our efforts more focused than usual on raising awareness and supporting people with dementia and their families, and many organisations are hosting activities that you can get involved with.

Many of DAI’s members would prefer it was called World Dementia Month, as for those who do not have Alzheimer’s Disease, it can feel exclusive rather than inclusive of everyone with a diagnosis of dementia.

World Alzheimer’s Month was launched by ADI in September 2012. The decision to introduce the full month, to contain the existing World Alzheimer’s Day which is September 21, was made to enable national and local Alzheimer associations worldwide to extend the reach of their awareness programmes over a longer period of time.

For the last three years, DAI published a blog for every day of the month, but decided not to this year, as some people felt overwhelmd from receiving too many emails. Instead we are more focused behind the scenes on working towards intiatives that will last longer than a month, including human rights activities and fundraising so that we can continue to do our work.

Currently, our work is at the global, national and grass roots level, and where possible, and we aim to support local groups of people with dementia and their families who are workign in their local communities. At the grass roots level, our online peer-to-oeer support groups, cafes and “A Meeting Of The Minds” Webinars continue to be well attended.

As mentioned in last weeks blog, we are co-hosting our first live event which is also being run as an online Webinar.  Register here for “Voices of Dementia”. We only have a few spaces left if you wish to attend in person.

Register for the DAI #WAM2017 event: “Voices of dementia”

Whilst DAI has held a number of workshops as part of the Alzheimer’s Disease International or Regional conferences, including in Melbourne, Budapest, New Zealand and Japan, we have not yet held our own DAI conference, seminar or event where people can attend in person.

This year, we’ve worked hard to achieve hosting a DAI event, but also have been lucky to be supported by BlueCare: Live life your way to enable us to co-host our first event during World Alzheimer’s Month with the Dementia Awareness Advocacy Team in Brisbane, to be held on September 20, 2017.

We will also hold this as an online webinar at the same time, so that others can join us, and this event will replace our usual “A Meeting Of The Minds” Webinar in September. It will therefore be in two times zones, on September 19 & 20, 2017, but is still only one event.

Let’s hope this becomes and annual event, working together with local or national Dementia Advisory or Working Groups or Teams of people with  dementia and their families, towards ensuring a better world and a stronger voice for all people impacted by dementia.

You can register here…

 

We apologise to those who live in a time zone where for you to attend it will be extremely inconvenient, but we do hope to record the sessions so they will be avialable to watch afterwards on our YouTube channel.

 

 

 

Human Rights: from Rhetoric to Reality, #ADI2017Kyoto

This key note presentation was given by co founder of DAI, Kate Swaffer at the ADI conference held in Kyoto in April 2017. The WHO and others are now taking human rights for people with dementia seriously, this is an introduction about why it is so important, and the role DAI has played in the World Health Assembly adoption of the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva in May.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia – go to www.joindai.org to complete the membership application form

Or you can subscribe to our newsletter or weekly blog by visiting us at www.infodai.org

DAI’s Peer-to-peer support groups

DAI’s peer-to-peer support groups continue to grow and evolve, and following the departure of our global manager earlier this year, we have found that setting up each group with a number of co hosts to manage their own groups to be very effective. It also takes the pressure off of expecting one person to do it, which in hindsight was too much work for one person, but it also reduces the risk of the groups ‘falling over’ if that person gets sick or resigns.

These groups are truly empowering and supportive and our updated flyer about them can be downloaded here to share: DAI Global Peer-to-Peer Support Groups_2017

If you are a member of DAI and have not joined one yet, or haven’t been for a while, we hope to see you soon. You can email us at [email protected] to join. Last week, this is what I wrote after attending one of our USA peer-to-peer support groups:

“Just finished attending our weekly Richard Taylor support group… we’ve been laughing a lot (and almost crying a couple of times) for over 90 minutes. Discussions on grief and loss that we go through, ‘threesomes’ and the Three Stooges, the recent FTD conference and many other interesting things. Congrats to Jerry Wylie for setting up a local support group in his home town too, we were all truly inspired, and I get the feeling we will all help each other to do the same. We even introduced a young genius (the son of a member) to an older one, our long time friend and DAI support group member Phil… which was amazing.”

This week, our Monday Aussie group shared a video of a young girl who can not only sing, but who plays the piano with her toes as she has no arms; you can watch the video of it at the end of this blog. If any of us felt miserable about having dementia, this certainly motivated us to ditch PLOM (Poor Little Old Me) disease at least for a few moments! We also had a support group member play his guitar and sing his own song written about dementia and stigma, and we laughed and cried, as we shared and supported each other.

Our UK group this week had a new member as well, who was truly amazed how we connect from all around the world, and is going back to advocate that his national organisation get onto zoom so that remote members can participate fully in their national advocacy work! It is always wonderful to see our members empowered to become more active and to live positively in spite of dementia.

Long live Dementia Alliance International.

Frankly, this is the only truly helpful support I have ever received.

Now, what we also need to do it to make sure our care partners, and if we have younger onset dementia, our parents and sons also are provided with the same level of support. Unfortunately, just like people diagnosed with dementia setting up DAI, they may have to do it for themselves…

Finally, the members of DAI are very sorry to hear of Mick and Sue Carmody’s recent very serious health issues, and wish them a speedy recovery, or at least that their health stabilises soon. Our thoughts and love are with them, and their family at this time.

Girl With No Arms Sings & Plays Piano With Her Feet | Romania’s Got Talent | Got Talent Global

Have a great week,

Kate Swaffer, Co-founder, Chair & CEO, Dementia Alliance International

DAI granted NGO status at the COSP

DAI receives new NGO accreditation to the Conference of States Parties to the CRPD

The submission of DAI’s application for new NGO accreditation to the Conference of States Parties to the CRPD (COSP) was formally received on 23 May, 2017. In accordance with the Rules of Procedure of the Conference, our application was forwarded to States Parties to the CRPD, for their review.

At the first meeting of the 10th session of the Conference of States Parties on 13 June (10 a.m. to 1 p.m.), States Parties approved our new NGO application, on a consensus basis. This means we will be allowed to attend future COSP Conferences in our own right. Due to unsecured funding, we were unable to send anyone to New York this year to represent us, although we could have registered under ADI. Next year, we will be sure to find secure funding in time to attend! This is a portion of the acceptance email we received:

Congratulations! Your application for new NGO accreditation to the Conference of States Parties to the CRPD has been approved by consensus at its first meeting at the 10th session on 13 June, in accordance with the Rules of Procedure of the Conference. 

The list of newly accredited NGOs is copied below, and will also be published in the final report of the 10th session of the Conference of States Parties to the CRPD...

List of non-governmental organizations accredited to the Conference of States Parties to the Convention on the Rights of Persons with Disabilities on 13 June 2017:
 
1. AbleThrive
2. Access Exchange International (AEI)
3. Action on Disability Rights and Development (ADRAD)
4. Alhassan Foundation for Differently Abled Inclusion
5. Associação Nacional de Membros do Ministério Público de Defesa Dos Direitos dos Idosos e Pessoas com Deficiência (AMPID) (National Association of Members of the Public Prosecutor’s Defense of the Rights of the Elderly and Persons with Disabilities)
6. Atfaluna Society for Deaf Children, ASDC
7. Benemérito Comité Pro Ciegos y Sordos de Guatemala (Meritorious Committee for the Blind and Deaf of Guatemala)
8. Cambodian Disabled Peoples Organisation (CDPO)
9. Center for International Stabilization and Recovery
10. Dementia Alliance International (DAI)
11. Disabled Peoples’ International – Europe (DPI-E)
12. Disabled Peoples’ International Korea
13. Dream for Disability Foundation
14. The Family Resource Network Inc.
15. Federação Brasileira das Associações de Síndrome de Down (FBASD) (Brazilian Federation of Down Syndrome Associations)
16. Fight the Stroke
17. Fundación Descúbreme (Discover Me Foundation)
18. Fundación Dime, A.C. (Dime Foundation)
19. Instituto ser educacional (Educational Institute)
20. International Disability Alliance
21. International Dyslexia Association (IDA)
22. International Society of Physical and Rehabilitation Medicine (ISPRM)
23. Kids Brain Health Network
24. Kpakpando Foundation for Physically Challenged Persons
25. Markaz-e-Umeed for Special Needs Children – Pakistan
26. National Federation of the Blind (NFB)
27. New South Wales Consumer Advisory Group -Mental Health Inc.
28. New South Wales Council for Intellectual Disability
29. New World Hope Organization
30. Potohar Mental Health Association (PMHA)
31. Progetto Filippide (Philippine Project)
32. Sierra Leone Campus Civitian International
33. Swedish Disability Federation
34. Tangata Group
35. The Lucy Foundation
36. UCP Wheels for Humanity
37. Women Enabled International
38. Women’s Refugee Commission

We are now in the process of creating our DAI profile in CSONET which then means we will be able to register our representatives for future Conferences of States Parties to the CRPD. We will also be applying for Consultative Status with the ECOSOC now that we have been accepted as an NGO.

We need to ‘Think Outside of the Box’ by John Quinn

A few weeks ago at the ADI2017 conference in Kyoto, DAI and DAAT member John Quinn  gave a great presentation  We Need to ‘Think Outside the Box”, especially in relation to rehabilitation enablement and dementia. Thank you John for allowing us to showcase it here.

His power point slides can be downloaded here  We need to ‘Think Outside of the Box ’_John Quinn_ADI Kyoto2017 and his full speech notes are below:

“A friend of mine was diagnosed with Fronto-Temporal Dementia. He used to be a truck driver and tinkered with cars and engines most of his life. But only 18 hours after he had MRIs etc that resulted in his diagnosis, he lost his licence. He felt that his whole life had shattered. At the time, he was in his mid 40s, with four children. His wife had to return to full time work to continue paying off the mortgage and to support the family. But by the time he was 50 years old, when his youngest child was 7 years old, he was placed into a Care Facility, because there was no one at home to care for him. The average age of the other residents was about 85 years old. He felt hopelessness… and also a failure, because he couldn’t provide for his family.

There was no immediate rehabilitation for him, however; soon afterwards, his friend told him about a group of men who were rebuilding an antique truck. Years later, they still catch-up every week to work on this project together. Now he is proud of what he is achieving albeit small steps. In time, the organisers hope that there’ll be a restored, functioning, antique truck available for street parades, TV advertisements and movie sets.

This is an example of what rehabilitation might look like. OR is it enablement? OR… is it empowerment?

In some health areas, for example with various forms of addiction, the word enablement has different connotations than in the Dementia arena, so we must be mindful of the meaning of words here, too. Also, I’ll later refer to how I felt disempowered by others, then later with time and unexpected support, regained the sense of feeling empowered. Some of us who live with Dementia are advocating for the correct use of language in the media and within our Communities. Perhaps here is another area where better awareness of language can improve our lives. Whatever the correct word is, the result should be better outcomes for people living with Dementia. Here in this context, for simplicity, I’ll use Rehabilitation and Engagement interchangeably. However, it will only be effective if it empowers us.

In an ideal world, some types of rehabilitation relevant to the person’s current life and the personal symptoms of Dementia should be offered at the time of diagnosis. Everyone has a Right to Rehabilitation to his or her changing abilities, BUT let’s not dismiss ANY type of rehabilitation. We need to ‘Think Outside of the Box”, for the best outcomes to empower us. Everything with value will be valuable!! Who determines what is valued? I believe that it must be the person with the diagnosis in the first instance. This type of conversation and the ensuing negotiation is relevant regardless of the age of the person living with Dementia.

However, it is more important when someone young is diagnosed, as there is an emerging realisation that when a younger person is diagnosed with Dementia at the earliest opportunity, there will be a longer period of successful engagement with his or her current lives. Immediate support and contact with someone who can guide the person living with Dementia and their family through this tumultuous life-changing period, would maintain some hope for the possibilities for the future; and, feelings of being valued as a person who can still contribute to their family and society.

At least in my own case, I believe that I still could have had a sense of purpose and self esteem… But I lost them when I lost my career. The career that I loved and was respected in, had taught me skills and knowledge for 35 years. Yet suddenly, in 2008, I not only couldn’t do it due to my symptoms, I didn’t have the opportunity to return to it with support or adaptations post diagnosis.

Interestingly, for the past two years, with encouragement and lots of support, I’ve been able to use those skills that I learnt throughout my lifetime in my career… in my advocacy. This advocacy has also opened many new pathways and opportunities for me, that I couldn’t have envisaged, and I value that. Through my advocacy, I’ve met new, genuine lifelong friends; I’ve had the opportunity to meet with people who inspire many; and I’ve been to places that I wouldn’t have considered before. I’ve regained a passion, a focus and a purpose again. Prior to this, I’d felt that everything about who I was, had been taken away from me…..by Dementia, and by the responses of those who could have offered support if they’d only looked at me as the person who I was…………not just as Dementia.

I can’t learn new things easily. I get lost in the process and if I do manage to learn new things, it takes an enormous amount of time and effort on my part, and patience by others. However, I still had, and still have, many skills and expertise in particular areas that the post-diagnostic model forgot to address or encourage. In my case I was an educator…..a School Principal or Deputy Principal of large Primary Schools. Therefore, I spent my adult life in education, learning new things and mentoring others; encouraging both the students and fellow educators to engage in learning skills and knowledge for a successful life. In other words, life long learning

But who else was I? What else was I passionate about?

I’ve always been a caring person and a family man.

But also, what comes to mind is my interest in active participation in sports. I not only trained and encouraged the students in a number of sports, at the school that I was at, but I also enjoy being a spectator of many sports.

During the last 25 years, I’ve run 3 marathons, about 20 half-marathons, a triathlon, and 30 charity fun runs, so as you can imagine I’ve always been reasonably fit. However, I have also participated in many challenging feats in recent years since my diagnosis, such as the Great Wall of China half-marathon, and climbed Mt Taranaki in New Zealand. In addition, since I started being involved with advocacy, I’ve also used my athletic ability to raise much needed funds and awareness in 2 separate challenges…..cycling through Vietnam and Cambodia after buying a bike when I couldn’t drive any longer; and walked our second Camino de Santiago, 825 kms from France across the top of Spain. Whist I could do the physical challenges they wouldn’t have been possible without the support of others, particularly my partner Glenys who did the planning, organisation and problem solving to ensue that I was able to successfully undertake these events.

So each one of us already had expertise, interests, and passions prior to our diagnosis, which if acknowledged and carefully nurtured and encouraged, can enable us to remain independent and interested in engaging in our future lives, albeit with some adaptations and support where necessary.

We need to look beyond the deficit model of what we can’t do, and instead look at the skills and knowledge that we already have. Board-certified Internist and Geriatrician, Dr Allen Power agrees…In his book ‘Dementia Beyonds Drugs’, he states…“Although there are cognitive deficits, many complex abilities are already preserved, which should be identified and cultivated”…..Others in the medical field; allied health professionals; Governments and organisations; and, our family and friends, need to get on board with this concept to encourage us to maintain our skills; and, provide individualised personal programs and career support, so that we can continue to be independent for as long as possible.

I already know what I can’t do. I knew about them years before I received an accurate diagnosis. I’m reminded of them daily when I get confused or frustrated, knowing that everyone is thinking at a different speed and level. I am particularly reminded of them, when I travel; have the rare late night with my son at the football; or, after the many social interactions that occur throughout each day. And strangely, I’m subtly reminded of them when some people challenge my diagnosis, because I can interact with others and I’m reasonably fit, therefore don’t look like I have Dementia. However, they don’t see how I can’t function for hours, after engaging in most activities.

Please don’t misunderstand me though. The type of rehabilitation that people usually think of, is also very important, for example, Occupational Therapy, Speech Therapy, Physiotherapy. However, when it’s Dementia, aren’t these therapies really enablement? I’m never going to rehabilitate back to close to my former self, as I may have after a stroke or heart attack.

In about 2011, after my diagnosis, Glenys said to my neurologist that she was aware that there are Speech Therapists who specialise in rehabilitation after a Heart attack or Stroke. She questioned whether there was one who specialised in Dementia, to hopefully provide some strategies and knowledge that we didn’t have, that might assist us in our daily communication……His reply was that he’d never been asked that question before.

There have been some changes though. This time last year, we were asked to give the Consumer Perspective to the Australian Federal Minister for Health on a new government document for People with Dementia. This document has some excellent points enmeshed in the 109 ‘Principles of Care’.

There are two references to accessing Speech Therapists…..But we also need speech/language therapy for people who have word finding, processing problems, or other language concerns etc, like I have?

The medical profession needs to consider authentic rehabilitation which is vital for younger people living with dementia or those early in the dementia process. Are some attitudes because dementia is a terminal condition for which there is no cure? I don’t know…..However, through my involvement on a national committee where up to 40 different research activities are currently happening, I’m aware that there’s some good, innovative research that includes a focus on empowerment. So there’s emerging hope for a change in attitudes.

I have personally done a little research on what can impact on the progression of Dementia and what keeps our brains healthier…..things like the effects of music; and learning new languages and skills. As a result I’ve formed an acronym….It’s my N.A.M.E.S……names….N for Nutrition; A for Attitude and Acceptance; M for Mental activities, Music and Meditation; E for Exercise and Enjoyment; and S for Support, Sleep, Socialisation, and Setting Goals. Some of the activities that I engage in for my NAMES, include, learning Spanish; doing crosswords with my non-dominant hand; volunteering each week; advocating; writing to the Editor of the local newspaper; and, writing a blog. My N.A.M.E.S. keeps me on track to do what I believe will help me.

I want you to consider these questions. What value do our existing skills hold? What value is there in learning through experience rather than in isolation, for example, in a one-on-one class with a therapist? What value do we place on participation with fun, social engagement? How can we be empowered through support and opportunity to live as independently and as fulfilling a life as possible? I’ll finish with another quote by Dr Allen Power, in “Dementia Beyond Drugs”. Well-being is not dependent on cognitive and functional ability and should be maximised in all people. There has to be a paradigm shift in the way we view people with Dementia

Thank you.”

The 70th World Health Assembly 2017

Opening of the 70th World Health AssemblyThe 70th

As one of eight co-founders, and current Chair and CEO of DAI, I’ve been in Geneva this last week attending the 70th World Health Assembly (WHA). Professor Peter Mittler arrived yesterday as well.

The theme this year and a brief statement about what the World Health Assembly is about is below, and you can read much more about it on the WHO website, via the link of the title.

Health throughout the Life-course at WHA70

“The World Health Assembly is the decision-making body of WHO. It is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board. The main functions of the World Health Assembly are to determine the policies of the Organization, appoint the Director-General, supervise financial policies, and review and approve the proposed programme budget. The Health Assembly is held annually in Geneva, Switzerland.”

At this years World Health Assembly, the dementia community anticipate the Global Action Plan for a Public Health Approach to Dementia will be accepted at the WHA.

As The Global Action Plan is item 15.2 on the agenda, we have had no control of when the item will come up, and had hoped it would be on Friday, in order for us to witness this historic moment. It is one that people with dementia and advocacy organisations have campaigned on for many years.

DAI specifically campaigned for the plan to include a human rights based approach, so luckily, athough I cannot be here, Peter will still be here.  Although there is little evidence of human rights in the Final Action Plan, you can read our response to the Draft.

This was the announcement from Day 1 of the election at the World Health Assembly of Dr Tedros Adhanom Ghebreyesus as new WHO Director-General. I was pleased to be in the main Assembly hall to witness this, at the opening of the WHA.  You can also read many of the updates about the progress of the event on the WHO website about the progress and sessions held each day.

Throughout the week, I have attended many side events, including two hosted by the Non Communicable Diseases (NCDS’s) Alliance. Whilst dementia is a NCD, it was not mentioned once during these events, even though every risk factor for almost all of the other NCD’s is also a risk factor for dementia.

One side event I attended, “World Economic Forum” was is a very sobering session, as most of the panellists said our health system is broken around the world, and it is much worse for women. The gender bias makes this worse.

There are almost 30 events like this during the WHA, but the Chair of one of the Side events said quite clearly, that too often people go home, back to their jobs and nothing changes. He continued by saying too few people are TAKING ACTION, and there is also a general bias against women which often results in them being denied care,  because as women, they are treated as if their symptoms are not real.

On top of that, all too often, dementia remains the elephant in the room, in part due to people stating it is covered in mental illness. Dementia is not a mental illness, and as such, needs to receive its own specific attention, and we remain hopeful the Global Action Plan for a Public Health Approach to Dementia  will help ensure this.

Hopefully we will be able to announce its adoption early next week.

Kate Swaffer