Category Archives: Research

Media release 2: DAI rationale for service changes

DAI e-News April 2022
Detailed explanation of service changes

Dear colleagues and friends,

Further to our recent announcement of the changes in DAI, we wish to share the following more detailed explanation of why it became necessary to suspend so many of the DAI member services as well provide some history for context. Looking back has been essential to moving forward.

Most reading this will know that Dementia Alliance International (DAI) was founded on 1 January 2014 by eight people diagnosed with dementia, all with a dream to provide support for other people living with dementia, and to advocate for others with dementia to live more positively, for better services and support, and for our rights.

The eight founding members hailed from three countries with a collective dream for an international organization being a group ‘of, by and for’ people with dementia.

Exemplifying the nothing about us without us philosophy as the founders had all recognized that people with dementia did not truly have a voice having had it taken away by the stigma and discrimination of dementia. Their dream was to advocate for the autonomy and rights of all people living with dementia.

People with dementia have a human right to self-determination and full inclusion in society (not to be isolated, discriminated against, or segregated from society).

Peer to peer support for people with dementia

The founders learned there was no organization with this shared belief among thousands of organizations whose leadership and missions were all about research for a cure or supporting the carer and that those organizations rarely included persons living with dementia in their governing ranks or in their mission statements. It’s as if people with dementia didn’t exist, except when used as fund raising tools.

Even support groups for persons living with dementia required the participation of a family member or care partner and the conversation was dominated by the one without dementia. We knew persons living with dementia needed and deserved a safe and private place to participate in peer-to-peer support.

We knew this methodology was valid as Alcoholics Anonymous had already proven it works. Many had already been meeting online to support each other and it is that camaraderie and self-determination and the growth of a collective global advocacy that gave birth to Dementia Alliance International, an organization founded and led only by and for persons living with dementia across the globe.

For many years, people with dementia had been promised funding for a global group, as far back as the late 1990’s, when Christine Bryden and others founded the Dementia Advocacy Support Network International (DASNI). The late Dr. Richard Taylor had also been promised the same thing many times but as it was never forthcoming, hence the founders of DAI decided to set it up, as well as fund it and run it themselves.

DAI has always had to fight hard for anyone to support us, and then, it has never been more than piece-meal funding. Typically, just enough to set boundaries on our advocacy.

The Board and many of our members believe the best work that DAI has done is to provide peer to peer support, which in turn has empowered more newly diagnosed people to get back to living.

DAI was using Zoom long before the COVID pandemic; it started the first online peer to peer support group for people with dementia in the world, which continues today, and DAI still hosts the only living alone peer to peer support groups that we know of, in the world.

DAI’s global support for, and advocacy and representation of people living with dementia has been significant and ground-breaking, and we know we have much to be proud of.

Our members continue to report that our peer-to-peer support groups are an amazing, life-giving steppingstone for people more newly diagnosed with dementia to ‘get back to living’. This is truly powerful work, that even in times of covid, no other organisations yet do.

However, it appears to DAI that many people without dementia do not fully support our organisation. We base these assumptions on the actions and attitudes of others, and because so few people or organisations support DAI, promote DAI, partner with DAI, or donate to DAI.

In fact, pre covid, when zoom webinars being hosted by other organisations were rare, DAI tried a few times to add a small registration fee to their monthly webinars to help with financial sustainability.

Shockingly, a great many people in paid employment, including staff members of dementia charities, falsely registered as DAI members, to avoid the fee.

The other truth that DAI has had to face, especially members of DAI who are not active advocates with their national charities, is they are still fighting for Article 19 of the CRPD.

Inclusion is too often still missing, and it continues to be ‘about us, without us’.

For these and a numer of other reasons as outlined below, DAI had no choice but to reassess its future direction and services.

International dementia advocacy requires significant leadership, statesmanship and organizational skills as well as public speaking skills and knowledge of not only of the lived experience of dementia, but of policy, human rights and so on. Just being diagnosed with dementia, doesn’t provide these skills and thus there is a limited pool of talent to draw on. DAI has found it difficult to retain people in our membership with a passion for advocacy, who have the required skills and are willing to serve DAI, as they are often approached by the charities, researchers, and other organisations to get involved with their work.

This leaves DAI ‘dry’ and returning to square one repeatedly having to find and train new members to do the work. Even when DAI is actively working with others, it is mostly without renumeration to, or recognition of DAI or its membership.

DAI has faced some unique and difficult challenges 

Firstly, all DAI members live with dementia, and whilst they are often willing to volunteer, they also have significant time and financial constraints as they tackle the daily challenges of living with dementia, and the lack of post diagnostic support. Beyond that, DAI has faced many other significant difficulties.

  1. Other charities, organisations, researchers, start-ups, and individuals are constantly inviting DAI members to work with their organisations, which then means DAI has had difficulty retaining members to support their own organisation.
  2. Furthermore, other organisations usually have significantly more funding than DAI, and are therefore able to provide paid staff to support their volunteer self-advocates, making it even more difficult for DAI to retain active members.
  3. DAI has increasingly been asked over the last 8+ years to support researchers, individuals, and organisations with their grant applications, to promote their projects and surveys, but then not appropriately included in the work.
    • DAI is very rarely funded in the projects,
    • DAI is rarely included in the activities or focus groups projects, and instead of working with DAI, researchers go to the national dementia charities and their dementia working or advisory groups.
    • DAI is rarely referred to as an organisation for people with dementia, in the research outcomes, yet
    • DAI is expected to promote the surveys and other project activities.
  4. Since mid 2015, DAI has been thrilled to have the support and funding of strategic partners and other donations to fund its operations.
    • In mid 2015, ADI became DAI’s first strategic partner
    • In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner
    • Both partners currently provide $20,000 USD per year
    • DAI receives very few other donations.
  5. Clearly however, this means we have insufficient strategic partners and donors to remain sustainable in our current format, let alone have access to financial resources that can be used to hire paid staff to support our organisation.
  6. The lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.
    • Therefore DAI has had no choice but to modify its structure and services.
  7. We have been well supported by our non-member volunteers, but it is becoming increasingly difficult to find volunteer staff who have the time, or that don’t have an unconscious biases impacting their ability to work within the ‘nothing about us, without us’ philosophy, or hidden personal agendas which we do not fit with DAI’s vision or mission.
  8. Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
  9. Recognition of the disabilities caused by dementia and adequate reasonable adjustments and disability support are not provided making it difficult or impossible for persons living with dementia to participate fully or equally.
  10. Finally, whilst others appear publicly to support DAI, most do not want a truly autonomous voice in this very crowded space, notably, when we differ to the goals of other organisations.

Working with DAI in the future

Moving forward, DAI will fulfil any current commitments made to research projects or other projects and organisations. It will also continue to work with the WHO and UN, as it has over the last many years.

However, it will need to limit its involvement with individuals and other organisations in the future.

It is obvious that people with dementia continue to be the only people in the dementia sector who are not paid for their labour and expertise, and where others who get to meet our members, then want them to work with and promote their organisations, but with little or no reciprocity to DAI.

Therefore, DAI will soon release a policy for how individuals, start-ups, researchers, and all others will be able work with our organisation and our members, so that it is fair and equitable for everyone.

Although this has partially been outlined in the documents, Value to a sponsor partner or donor and Opportunities for researchers, partners sponsors and associates, both updated in 2018, it is apparent they are unclear.

Thank you

The board sincerely hopes this rationalization and suspension of four services is temporary, and that some will be reactivated in the future, and we thank you for supporting us as we streamline our operations to ensure our core activity, which is peer to peer member support is sustainable.

DAI’s incredible work and willingness to support and work with others, without reciprocity has been a major contributor to the need to make these very difficult decisions. Hence, we really hope that moving forward, the many organisations and individuals DAI has so actively promoted and supported for the last eight+ years, will consider reciprocating and partnering with us in the future.

“Nothing about us, without us.”

Cheryl Day
Acting Chair
On behalf of the Board of Directors
Dementia Alliance International (DAI)

DONATE TO OR PARTNER WITH DAI TODAY

Reminder: Effective immediately

DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, not through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its CPA to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

DAI Human Rights Advocacy

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June, while the board decides on its long-term future direction. DAI will continue to work with the WHO and UN, will retain its ECOSOC status at the United Nations, and its Observer status with the International Disability Alliance.

DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars
  2. Monthly virtual Cafe Le Brain
  3. Twice monthly Brain Health Hub Zoom Meetings
  4. The annual WRAD event

Furthermore, to reduce costs, DAI will cease the monthly newsletter and other mailings, and blogs on the DAI website will be used to communicate to members instead. We hope the increased activity on our social media pages will fill any potential communication gaps.

Please note therefore, that all future official and other communications will be through the website as a blog; this mean you need you to subscribe to them to receive our news and any other communications. 

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

Watch our webinar “Cognition-oriented treatments for people with dementia” on YouTube

Available to watch now is the recording of the September Webinar, Cognition oriented treatments for people with dementia, by by Dr. Alex Bahar-Fuchs and Dr. Loren Mowszowski. It was one of four from our 2021 Dementia Awareness Month series of webinars focused on Rehabilitation for Dementia webinars.

“Cognition-oriented treatments for people with dementia”

This webinar was presented by Dr. Alex Bahar-Fuchs who is a clinical neuropsychologist and an NHMRC senior research fellow in the Department of Psychiatry at the University of Melbourne, and Dr. Loren Mowszowski who is a registered Clinical Neuropsychologist and NHMRC-ARC Dementia Research Development Fellow at the University of Sydney.

About this DAI “Meeting Of The Minds” Webinar

There are no known effective interventions to stop or reverse the progression of symptoms in people with dementia; however, many treatments are available to slow the process of decline, reduce the impact of cognitive and functional impairment, and improve the day-to-day experience, quality of life and confidence in people living with dementia.

In line with this, several high-quality Clinical Practice Guidelines for dementia rehabilitation around the world predominantly focus on recommendations targeting cognitive and mental functions, and a large body of evidence indicates that cognitively oriented treatments have shown promise in relation to cognitive outcomes. In this presentation, we will discuss the key features and evidence behind three main approaches to cognitively oriented treatments: cognitive training, cognitive rehabilitation and cognitive stimulation therapy.

The presentation included some practical examples of how the techniques underpinning some of these approaches can be used to support day-to-day activities. For health professionals, we propose key factors to consider when planning or implementing cognitively oriented treatments. Finally, the presenters proposed areas requiring future attention in research and clinical practice.

November Research Wrap – Building Bridges – the importance of collaboration in research

This is the second in our re-emerging series of monthly blogs or articles focused on research, and was co-authored by a researcher Jennifer Bethell, and Christine Thelker who is a very active Alumni board member of DAI.

It highlights the importance of including people with dementia as collaborators in research, and supports the recently launched #DAI 2021 Global Report, Valuing the advocacy of people with dementia: moving dementia out of the shadows.

Building Bridges : The Importance of Researchers and Persons with Lived Experience Coming Together

“Patient engagement” is defined by the Canadian Institutes of Health Research (CIHR) as meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation – where “patients” include people with personal experience of a health issue and caregivers, including family and friends.1 Other organisations, including in the UK and US, use slightly different terms: patient and public involvement2 or engagement,3 but they all overlap on the importance of involving patients and caregivers. Of course, for dementia, the word “patient” may not always be the best; people living with dementia are many things – they have identities defined by a lifetime of personal and professional relationships and activities – for most, being a “patient” is a relatively small part of that. We try to talk about people with lived experience instead, but also see the need for more formal terminology.

There are a few reasons both researchers and people with lived experience have argued for patient engagement in research. Mostly, it comes down to two things:

  1. It makes for better research – people with lived experience can help researchers figure out how to plan their study in a way that asks the right questions for the greatest impact, is more appealing for prospective participants, collects the most important information and shares the results with more people and in the right way.
  2. It’s the right thing to do – people impacted by the research should have their say in what research is done and how it is done as well as the ways the results should be used.

For research on dementia, there’s another reason: it challenges the stigmas associated with dementia. Stigmas associated with dementia, including public stigma and self-stigma, are major issues worldwide4-9 and can have negative effects on the health and quality of life of people impacted by dementia. Engaging in research helps to challenge negative assumptions about the abilities of people living with dementia.

Whatever the motivations, patient engagement means people with lived experience of dementia are becoming more and more involved in research. No longer just “study subjects”, they are taking on roles as members of the research team, participating in planning, conducting and communicating research. This idea is not new – it’s been common practice in some areas of research for years – but it is still relatively new for research on dementia.10 Fortunately, dementia advocates, researchers and research organisations worldwide are working together to move these ideas forward.

As a person with lived experience, I can remember feeling a sense of intimidation at the very thought of working with a researcher. Having your confidence shattered with diagnosis, the thought of working alongside a researcher seemed out of my realm. I was sure I would have nothing to offer, after all they were at so much of a higher academic level.

In my first venture into research, I was hesitant, scared actually, nervous, apprehensive.  It took me a while to be brave enough to engage and interact. But taking that first step was so important – because I haven’t stopped. I started working with a number of researchers: Kathy McGilton at Toronto Rehab then the TREC (Translating Research into Elder Care) team as one of their Voices members, then with AGEWELL and Noelannah Neubeaur on the Dementia and Wayfinding Project. This brought me to the CCNA (Canadian Consortium on Neurodegeneration in Aging), where I first met Jen Bethell, Ellen Snowball and Carrie McAiney.

Getting involved in research was the start of feeling confident again, feeling I had value and worth, that I could still contribute to this world in meaningful ways.  Working with the researchers I work with now is truly a highlight of life for me. The connection, the friendships that have come from the work we do will last long past the end of a project. I continue to learn from both researchers and other people with lived experience. Understanding the work being done, how things move forward and why enables me to share in my advocacy. I learn each time we meet and enjoy watching the projects come to fruition. Giving researchers insight and the ability to understand the lived experience helps ensure their work can have a positive outcome for those affected by dementia. It creates a great sense of pride in knowing you have helped produce something of great value, work we all can take pride in, and that will still be helping others long after my time is done. I always leave feeling better and having a better day. I leave feeling valued, appreciated and like I am part of a team. I am grateful to work with researchers, I will continue to recommend that more people with lived experience get involved. Let’s keep building bridges, because together it is making a difference for those with the lived experience.

Taking that first step is important. I would recommend people with lived experience get involved with groups like DAI(Dementia Alliance International), DAC (Dementia Advocacy Canada), DAA and others, they will help you find research groups. Don’t be scared to try different research groups till you find the one that fits for you, or maybe several will resonate with you.

As a researcher, I also remember the first project involving people with lived experience. I was intimidated – they were the experts! But I was excited – yes, I believed engaging people with lived experience could make research better and it was the right thing to do. Through this work, I also learned the importance of tackling the stigmas associated with dementia9 and started to think of “patient engagement” in research as one way to do this. From my experience, researchers who want to engage people with lived experience of dementia share these motivations – we are also curious about others’ perspectives, open to new ideas, adaptable when circumstances change and humble about things we don’t know. We want to make research a place where people with lived experience of dementia feel valued, respected and supported.

Through the CCNA, I have had the privilege and pleasure of working with Christine as well as 16 other people with lived experience of dementia from across Canada. They came together just over a year ago, but the CCNA Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group is already contributing to research grant applications and projects, planning and participating in our annual Science Days and helping to shape the way research is communicated. They’re also influencing my own work and views on dementia and research. But there is much more to be done! If you are a person living with dementia, in Canada, and interested in hearing more about opportunities to get involved in research – please reach out to us.

Christine Thelker is an author, an advocate, Alumni Board Member of DAI (Dementia Alliance International), Recipient of the Richard Taylor Award in 2021, and was diagnosed with Dementia at 56, she is now 62.

Jennifer Bethell is a researcher and co-lead of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) program.

References:

  1. Canadian Institutes of Health Research (CIHR) https://cihr-irsc.gc.ca/e/48413.html
  2. National Institute for Health Research (NIHR) https://www.nihr.ac.uk/documents/ppi-patient-and-public-involvement-resources-for-applicants-to-nihr-research-programmes/23437
  3. Patient-Centered Outcomes Research Institute (PCORI) https://www.pcori.org/about-us/our-programs/engagement/public-and-patient-engagement
  4. Alzheimer’s Disease International (ADI), World Alzheimer Report 2012 https://www.alzint.org/resource/world-alzheimer-report-2012/
  5. Alzheimer’s Disease International (ADI), World Alzheimer Report 2019 https://www.alzint.org/resource/world-alzheimer-report-2019/
  6. World Health Organisation (WHO), Dementia: a public health priority https://apps.who.int/iris/handle/10665/75263
  7. Government of Canada, A Dementia Strategy for Canada: Together We Aspire https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html
  8. Shah H, Albanese E, Duggan C, Rudan I, Langa KM, Carrillo MC, Chan KY, Joanette Y, Prince M, Rossor M, Saxena S, Snyder HM, Sperling R, Varghese M, Wang H, Wortmann M, Dua T. Research priorities to reduce the global burden of dementia by 2025. Lancet Neurol. 2016 Nov;15(12):1285-1294. doi: 10.1016/S1474-4422(16)30235-6.
  9. Bethell J, Pringle D, Chambers LW, Cohen C, Commisso E, Cowan K, Fehr P, Laupacis A, Szeto P, McGilton KS. Patient and Public Involvement in Identifying Dementia Research Priorities. J Am Geriatr Soc. 2018 Aug;66(8):1608-1612. doi: 10.1111/jgs.15453.
  10. Bethell J, Commisso E, Rostad HM, Puts M, Babineau J, Grinbergs-Saull A, Wighton MB, Hammel J, Doyle E, Nadeau S, McGilton KS. Patient engagement in research related to dementia: A scoping review. Dementia (London). 2018 Nov;17(8):944-975. doi: 10.1177/1471301218789292.

Check out our list of books, written by people with dementia (soon to be updated!).

Dementia Alliance International (DAI) DONATE OR PARTNER WITH DAI

Redressing Abuse and Neglect of People Living with Dementia in Residential Aged Care

 

 

The research project ‘Redressing Abuse and Neglect of People Living with Dementia in Residential Aged Care’ is being led by chief investigator of the project Dr Linda Steele fom the University of Technology, and Kate Swaffer, a co founder of DAI who is the associate investigator.

Dementia Alliance International (DAI) is an organisational partner.

We therefore wish to highlight this opportunity to have your say about neglect and abuse of people living with dementia in Australian residential aged care facilities and older people’s mental health facilities (‘residential care’).

Dr Steele is currently seeking participants for the online focus groups.

We are hoping to speak with:

(a) people living with dementia who live in Australia,

(b) care partners and family members of people living with dementia who have experienced abuse or neglect in residential aged care and who live in Australia, and

(c) advocates and lawyers who work in dementia rights, disability rights or older people’s rights who live in Australia.

Here is a brief overview of the project:

Informed by the perspectives and experiences of people living with dementia and their care partners, family members, advocates and lawyers, this project will explore the need to redress (i.e., right the wrongs of) neglect and abuse of people living with dementia in Australian residential aged care facilities and older people’s mental health facilities (‘residential care’). The project will consider why and how to right the wrongs of abuse and neglect and how redress might be supported by the legal profession in order to contribute to justice, healing and closure for the dementia community.

If you would like to participate in this research project or find out more information please email Linda at:

Or visit: https://forms.gle/kvoSf7QRr2fF2ktx5

Download the flier here…

 

 

Monthly Research Topic – Brain health

We are pleased to recommence a series of monthly blogs, focused on a research topic or theme, and wish to thank PhD candidate Laura Garcia Diaz for writing the first one, and our Brain Health is so important, with or without a diagnosis of dementia!

Many of you will  know DAI hosts a twice monthly Brian health meeting, which is open for anyone to attend, so please contact us if you’d like to join to the mailing list for notifications about these meetings. DAI also hosts a Brain Health group on Facebook, and has a Brain Health Hub on our website.

Let’s talk about brain health 
By Laura Diaz Garcia © 2021

Your brain never sleeps. It is constantly helping you do the things that are important to you. Whether that is making a meal, going on a walk with a friend, or reading a blog about brain health, your brain is always working behind the scenes. The brain does a lot of work for us!

That is why it is so important to think about brain health.

There is strong evidence that people can reduce their risk of cognitive decline by making key lifestyle changes(Livingston et al., 2020):

Be physically active

Exercise increases blood flow to your brain, nourishing your brain cells with nutrients and oxygen. Regular exercise is also good for your heart and can help reduce stress and improve your mood. In a recent study, researchers found that high levels (over 150minutes per week) of physical activity in mid-life is associated with better brain health in later life (Palta et al., 2021). Physical activity can take many forms including walking, dancing, gardening, and playing with children.

Be socially active

There is good evidence that staying connected with your friends, family and other community members is good for your brain health. When we are socializing we are constantly using our brain to help us understand what others are saying, expressing ourselves, laughing, and staying engaged in conversations. In a recent study, researchers found that individuals who reported greater levels of social engagement had more gray matter in the brain (Felix et al., 2021). Gray matter supports memory, emotions and movement control. Social engagement can take many forms including volunteering, attending a religious service and going out for dinner with a friend.

Be cognitively active

Challenge your brain! When we follow a routine, we start doing things without thinking much about them. Just as exercising can help improve your cardiovascular health and body strength, challenging your brain can help engage new or rarely-used mental pathways. Researchers have found that adults 65 years and older who read, play games, speak a second language, or play music have better cognition than those who do not (Chan et al., 2018; Lee et al., 2018). Challenging your brain means trying out something new, such as learning a new language or using your non-dominant hand to write notes, and doing it regularly. To help you do something challenging regularly, try finding a challenging activity that you enjoy.

Follow a healthy diet

The food that we eat is the fuel that our body, including our brain, uses to help us do the things that are important to us. That is why it is important to eat a nutritious, balanced diet. A healthy diet can support our overall health, including our brain health. Although no specific diet has been found to be the best for the brain, the impact of the MIND and Mediterranean diets on brain health are being studied with promising results (Hosking et al., 2018; Petersson & Philippou, 2016). These diets recommend regular consumption of vegetables, berries, nuts, whole grains, olive oil and legumes. It is also recommended to limit process foods, sweets, dairy and meat.

Some of the things mentioned in this blog, such as staying physically active, may have been harder to do during the COVID-19 lockdowns. The COVID-19 lockdowns illustrate how sometimes engaging in brain healthy activities may not be possible because of our environment.

Although at the personal level there are a lot of things that we can do to support our brain health, it is important to advocate for safe public spaces for physical activity, affordable nutritious food, and community programs that encourage social interaction. Educating ourselves about brain health is an important first step. Advocating for policies and environments that support healthy choices is also important to ensure that all community members have access to services and programs that will encourage and support healthy choices.

There is no evidence that there is a single thing that you can do that will benefit your brain health the most. However, the research shows that taking small steps to protect our brain health can make a difference, so find several things that you enjoy and try to stick to them!

Reading blogs such as thisis one way to remain cognitively active. What else will you be doing today to for your brain health? Is there anything that you could do to support the brain health of your friends and family?

Let’s keep the conversation going!

Laura

Donate or Partner with DAI today

References

Chan, D., Shafto, M., Kievit, R., Matthews, F., Spink, M., Valenzuela, M., & Henson, R. N. (2018). Lifestyle activities in mid-life contribute to cognitive reserve in late-life, independent of education, occupation, and late-life activities. Neurobiology of Aging, 70, 180–183. https://doi.org/10.1016/J.NEUROBIOLAGING.2018.06.012

Felix, C., Rosano, C., Zhu, X., Flatt, J. D., & Rosso, A. L. (2021). Greater Social Engagement and Greater Gray Matter Microstructural Integrity in Brain Regions Relevant to Dementia. The Journals of Gerontology: Series B, 76(6), 1027–1035. https://doi.org/10.1093/GERONB/GBAA173

Hosking, D. E., Eramudugolla, R., Cherbuin, N., & Anstey, K. J. (2018). MIND not Mediterranean diet related to 12-year incidence of cognitive impairment in an Australian longitudinal cohort study. Alzheimer’s & Dementia. https://doi.org/10.1016/j.jalz.2018.12.011

Lee, A. T. C., Richards, M., Chan, W. C., Chiu, H. F. K., Lee, R. S. Y., & Lam, L. C. W. (2018). Association of Daily Intellectual Activities With Lower Risk of Incident Dementia Among Older Chinese Adults. JAMA Psychiatry, 75(7), 697. https://doi.org/10.1001/JAMAPSYCHIATRY.2018.0657

Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., Brayne, C., Burns, A., Cohen-Mansfield, J., Cooper, C., Costafreda, S. G., Dias, A., Fox, N., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. B., Ogunniyi, A., … Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. In The Lancet (Vol. 396, Issue 10248, pp. 413–446). Lancet Publishing Group. https://doi.org/10.1016/S0140-6736(20)30367-6

Palta, P., Sharrett, A. R., Gabriel, K. P., Gottesman, R. F., Folsom, A. R., Power, M. C., Evenson, K. R., Jack, C. R., Knopman, D. S., Mosley, T. H., & Heiss, G. (2021). Prospective Analysis of Leisure-Time Physical Activity in Midlife and Beyond and Brain Damage on MRI in Older Adults. Neurology, 96(7), e964–e974. https://doi.org/10.1212/WNL.0000000000011375

Petersson, S. D., & Philippou, E. (2016). Mediterranean Diet, Cognitive Function, and Dementia: A Systematic Review of the Evidence. Advances in Nutrition, 7(5), 889–904. https://doi.org/10.3945/AN.116.012138

 

How to make dementia a rare disease by Dr Dale Bredesen

As part of our daily blog series for World Alzheimer’s Month #WAM,  Dementia Awareness Month #DAM, or World Dementia Month, although we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia, we are also pleased to publish other content related to living with dementia.

Hence for today, we are publishing the video recording of a recent #DAI Brain Health meeting with guest speaker Dr Dale Bredesen, and also attach his power point slides. Professor Bredesen’s talk describes the first reversals of cognitive decline in patients with early stage Alzheimer’s disease and a recent successful clinical trial.

Dale is internationally recognized as an expert in the mechanisms of neurodegenerative diseases such as Alzheimer’s disease and other dementias, and the author of the New York Times bestsellers The End of Alzheimer’s, The End of Alzheimer’s Program, and the newly released The First Survivors of Alzheimer’s.

How to make dementia a rare disease

By Dr Dale Bredesen

 

Since you’re here, please donate to DAI today

By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.

#Hello, my name is Kate

Another #DAI #Hello story, this time from DAI co founder, Kate Swaffer.

Hello, my name is Kate Swaffer. I am the current Chair and one of eight co founders of Dementia Alliance International (DAI). I received a diagnosis of the semantic variant of Primary Progressive Aphasia just over 11 years ago at the age  of 49, although at the time I was told it was Sementia Dementia when first diagnosed.

The first 12-18 months were spent in fear and even thoughts of suicide. I cried for weeks, expecting the worst. My whole family loss hope for our future together.

Why? Well, not one person, including health care professionals told us there was still a good life to live, even with dementia.

Then through Dr Google, I met the late Dr Richard Taylor online, and first through his writings and then chatting via email and google hangouts,  I then started to realised my life could go on. I used to tell him often, he saved my life!

The other life saving thing that happened, was being at university as they simply saw me as a person with acquired disabilities, and supportd be via their Disability Services to continue to live my life!  This link takes you to an article I wrote about dementia, rights and disability.

Studying for me was a hobby, so it was meaningful, and fun. It also has the benefits of neuroplasticity, for which there is growing evidence for its value in terms of rewiring our brains.

Then, and now, most people have the very wrong misperception that a person diagnosed with dementia goes from diagnosis, almost immediately to end stage, almost overnight, even many of the health care professionals.

It may be at an unconscious level, but most people who are newly diagnosed are still being Prescribed Disengagement®, also a reason that keeps me motivated to contiue to be an activist for changing what happenes at the time of diagnosis, and campaigning for rehabilitation and other disability support for us all.

At best, we are told to get acquainted with community or aged care services, and to get our end of life affaris in order. We  rarely receive referrals to disability services, or other allied health professionals such as speech pathologists to suppot language and communication disabilities.

This lack of post diagnostic support is a major breach of o ur most basic human rights.

I’ve written books and many articles since being diagnosed with dementia over the years, and continue to do so, as well as being very involved in research about improving the experience of diagnosis and quality of life for all people with dementia.  I’m deeply grateful that Richard Taylor wrote and recorded a beautiful review of my first book, What the hell happened to my Brain: Livng beyond dementia.

My passion and goal is to empower people with dementia to live more positively and more independently with dementia, for as long as possible, rather than  to only go home and prepare to die via aged care. The other is to find a way for us all to work together globally, to advocate for global change.

Kate Swaffer © 2019

Note: Whilst many people know me, there are also many new DAI members who may not.  Hence, why I am saying #hello.

Please help us support more people with dementia to share their stories and live more positively by donating or partnering with Dementia Alliance International.

Pauls story

We are delighted to be able to share the story of one of our newer Canadian DAI members, Paul Lea. Thank you Paul, for being a wonderful new friend to those of in the support group you have joined, and for joining the Action Group to help us with our work for all members.

The tragedy of Pauls story, is that even in the 21st Century, in spite of all the advances in diagnostics and research, people are being discounted when they present to health care professionals with symptoms of dementia! His snippet on revenge near the end of his story, will for many, be very amusing.

Paul writes:

“I’ve always been a fairly healthy person both physically and mentally but in 2005 I started noticing things were sort of unusual. Let me clarify that I started forgetting where I put things like my keys etc., sort of brushed this off and went on with my life.

I worked for a major clothing manufacturer where I was a quality auditor. I started noticing that I was having some difficulties performing my job. My responsibilities were to check the quality and the sizes of the jeans or shirts or jackets. I started having difficulties once I did the measurements of putting them back into the plastic wrappings. I was getting angry at myself because I didn’t understand what was going on and I knew sooner or later that my supervisor would question why I was having my coworkers, fold and put back into the plastic wrapping. I started noticing that at the top of my eyes were like fractured vision or like a kaleidoscope; I could still see and do everything else so it was just a nuisance.

As days and weeks went on I noticed other things like difficulty reading. I saw my family Dr. and told him about what was going on and he made a note in my file. In the spring of 06 while I was working my right leg went kind of like rubbery and there was a feeling of pins and needles and I could not walk. Now I have sciatica on the right side so I figured it was acting up again and also brushed it off and continued working. I should mention that I was getting headaches not severe but still enough that I have to take aspirins now this is unusual because I rarely had headaches so once again I saw my family Dr. and explained what was going on and he made some more notes in my file.

Fast-forward to the end of 07 and I thought I had an idea what is wrong with me. I had seen on the TV a commercial about a man going to the store and buying a lemon and then going to put the lemon in the fridge and see that all that is in the fridge is lemons. The theme of the commercial was Dementia.

So I looked up Dementia on the computer and mentally went over all of my symptoms and what they said were signs and I decided that I had Dementia. I went to my doctor and explained to him my findings and asked if I could get an x-ray for my neck because I thought maybe I had a pinched nerve because my right arm also went numb and limp. At this point I found myself arguing with my family Dr. who I have known for 30 years and thought of him as a friend. After about 20 min. he finally gave in and set up an appointment to get an x-ray of my neck.

When the results came back negative I asked him why did my leg and my arm go limp. So I asked him, do I have Dementia? He looked at me and laughed and said no I do not have a Dementia and that I am a hypochondriac and stop smoking. I left his office a little confused but once again I brushed it off.

Now this was the first week of December 2008. I drove my wife and daughter to the airport because they were going to Jamaica, on the way I got confused on which exit I should take. This was a little disconcerting because I take this route every day to go to my work. Aft I finally got them to the airport and brushed it off.

A week later I picked them up at the airport and drove them home but once again I found myself being confused as there was construction and I could not figure out how to get around tit to get them home There was a line of angry sounding their horns., so I closed my eyes hit the accelerator and went through a stop sign and got them home.

After Christmas I’m at the bank and all of a sudden I get this sharp very sharp pain behind my left eye kind of like a brain freeze when you had something very cold but this is different because I also lost vision in my left eye. I finished my business and walked to my car but then, I again lost vision my left eye. I chuckled thinking what is be next and I didn’t have to wait long because I as I was walking towards my car but I ended up walking into the car behind mine .

I’m driving home and I am noticing that I keep veering to the left ,I decided that I must need glasses and went to an optometrist. During my examination he asked me a number of questions and he picked up on something and excused himself and asked the receptionist to call the hospital and tell them that I need to be seen as soon as possible as he thinks that I’m having a TIA

So now things seem to be pretty interesting I am a hypochondriac I have lost peripheral in my left eye I keep veering to the left when I’m driving I do not have Dementia and now I’m told that I have or having a TIA in other words a stroke, I thanked the optometrist and went home.

December 26 I’m watching TV and I have the exact same sharp pain loss of vision symptom only this time I really felt strange so I called 911 and was transported to the hospital where I was put into a room and hooked up to a monitor. About a half-hour after that I went and had a CAT scan that I went and had an MRI.

I still did not know what was going on eventually, the doctor came out asked how I felt and I said I’m fine can I go home ?and he said no they are going to keep me overnight and I asked why not he said because I had a stroke.

When I think of someone having a stroke I think of someone who has some form of paralysis or having trouble walking or talking but I had none of these so I asked again can I go home? I told him that I felt fine and I just wanted to go home this time he looked at me and shook his head and said again no but this time, he said I had a massive stroke and I should be dead. I looked at him and saw that was serious and I said I guess I still mean I can’t go home.

I stayed a week in the hospital and he finally said yes I could go home.

My family Dr., yes the same one that called me a hypochondriac was retiring so I went to his party. And I got my revenge, he handed me a camcorder and asked if I could film his retirement party and I said yes no problem. I’m looking at the camcorder and could not figure out how to operate it so I walked around pretended I was recording the celebrations.

June of 09 a psychiatrist gave me some tests and diagnosed me with Vascular Dementia

The rest is history.”

By Paul Lee © 2018
Dementia Alliance International

BILL GATES INVESTS IN DEMENTIA DISCOVERY FUND

VIDEO MESSAGE FROM BILL GATES AND MEDIA RELEASE FROM THE WORLD DEMENTIA COUNCIL:

Read the GatesNotes post here:  http://b-gat.es/2hZ4qXS and watch this accompanying video in which Mr Gates talks about the areas he believes need focus in order to alter the course of Alzheimer’s disease:

World Dementia Council welcomes boost for research on disease-modifying therapies

“Respected philanthropist Bill Gates has invested $50 million in the Dementia Discovery Fund (DDF). This is Mr Gates’ first investment in dementia research, and a personal one, sparked by experience of Alzheimer’s in his family, which, in turn, spurred him to spend time learning about the disease. Alzheimer’s is the most common of the diseases causing the symptoms of dementia.

Through this investment, Mr Gates recognizes that dementia is one of the most urgent health and economic challenges facing the world today. It has enormous human and financial impacts. Despite this, we currently lack drugs to prevent or cure the condition. With increasing prevalence rates globally, the need for effective disease-modifying therapies is pressing.

The G7 Dementia Summit in London in December 2013 set ambitions to identify a cure or disease-modifying therapy for dementia by 2025 and seek innovative ways to significantly increase investment in dementia research. The World Dementia Council, established after the Summit to lead global action towards the ambitions, endorsed the creation of an innovative public-private equity fund to accelerate progress to these ends.

Launched in 2015, the DDF invests in pioneering research and companies to speed up the discovery and development of disease-modifying therapies. It is the world’s first-ever dementia-focussed venture capital fund.

Dr Yves Joanette and Raj Long, respectively Chair and Vice-Chair of the World Dementia Council, welcomed the announcement. Dr Joanette said, “We are delighted that Bill Gates is joining the global race to defeat dementia and applaud his foresight. His very significant investment is timely as we are up against the worldwide clock to slow-down or halt the diseases that cause dementia. Bill Gates’ involvement is a major boost in enabling further and faster progress in breakthroughs on which effective new treatments will depend. Such treatments are a crucial component of the wider global agenda on prevention and cure, and improved care for people living with dementia.”

Watch our latest Webinar on Preventing, stabilising or reversing dementia

Our very sincere thanks to Dr Dave Jenkins and his partner Miki Okuno for their efforts in presenting to our DAI members and supporters last week on the Bredesen Protocol. They are based in Bali currently, so it really was an effort, as it was 4am for them!

 

We understand there are a lot of people who see this approach as futile, especially if they have been diagnosed many years ago and their dementia has progressed. Perhaps some even see it as a scam.

However, for many of us diagnosed with dementia who have already worked hard changing our lifestyles and improving our health, and who also believe by doing so we may also have slowed down the progression of our individual dementias, it is still hopeful. Make up your own mind, but please do not discount new evidence.

This protocol is based on evidence based research, and hopefully one day, advice for people with dementia on improving our lifestyle, our diet and offering us appropriate disability support and authentic rehabilitation will become the norm, as it is already for most of the other chronic diseases.  Improving well being and quality of life, even if it is not a cure (and even if it does not reverse or stabilise dementia),  has to be a good thing…

It was a very lively Q & A Session following this webinar and which lasted over an hour, although for privacy reasons, we never show that part of the webinar publicly.

To listen to or be a part of the Q & A session, you always have to register for our Webinars and attend.  You can go to our Youtube channel to watch other videos, and go to our events page to register for our next webinar, Dementia 101, by Associate Professor Lee-Fay Low.