Tag Archives: Christine Thelker

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

Dementia care & palliative care webinar: during and beyond COVID-19

DAI is pleased to highlight a panel presentation by DAI Board member, Christine Thelker from Canada,  at an important webinar on dementia and palliative care during COVID and beyond. Thank you Christine, for speaking up for all of us.

All of the presentations and discussions were not only informative, they were extremely enlightening. Christine’s speech comes in at 4:40 mins in the video recording of the session:

Download Christine’s slides here, and read her speech notes from the ADIHelpAgeIntWHPCA Palliative Care Webinar below:

Dementia, Palliative Care and COVID-19

Slide 1: I would like to start by thanking ADI, for the invitation to offer my reflections on this important topic, and congratulate you on hosting this important webinar.

Slide 2: The topics I will cover today are

  • Palliative Care
  • Advanced Care Directive
  • The impact of the Coronavirus pandemic

Slide 3: DAI COVID-19 graphic of services, for reference.

For people with dementia like myself, we have been facing serious discrimination in terms of being denied health care, and  we are definitely never offered Palliative Care until the very end stage, this was and is the case long before Covid 19.

You can see that DAI have been very proactive in terms of providing support for people with dementia during the pandemic, and this slide highlights our support.

Because palliative care is based on individual needs, the services offered will differ. I have lived experience of palliative care, for myself, and for members of my family, and past professional experience working on Demetia units in Long Term Care in the nursing feild.

Since the covid pandemic, many people have not been able to access palliative care, and are therefore being denied adequate relief of pain or other symptoms of illness such as nausea and vomiting and others.

Resources such as equipment needed to aid care at home, Assistance for families to come together to talk about sensitive issues,Links to other services such as home help and financial support.

Support for people to meet cultural obligations, Support for emotional, social and spiritual concerns, as well as Counselling and grief support for them and their families has also been missing.

Many people are in fact, dying alone.

Slide 4:  I am more frightened by the thought of ending up in any type of care than I ever have been of my dementia itself. As an advocate, I don’t just want to feel good about what I am doing, I want tangible change.

We are facing even more stigma and isolation since the covid pandemic, as are most older people.

Palliative care helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness, it identifies and treats symptoms which may be physical, emotional, spiritual or social.

As Kate Swaffer says: “People with-OUT dementia are not used to enforced isolation, or social and physical distancing, while people with dementia experience it from the day we dare to share our diagnosis.”

Isolation, stigma, discrimination and distancing (social and physical) are the daily realities of most people living with dementia.

We are all facing increased difficulties due to limited access not only to equipment, in home support, equipment including PPE, and health care including palliative care.

More people over 80 have died from covid, without access to Palliative Care, and without the support of their families, due to the restrictions imposed upon health care systems and society in general.

Covid 19 has highlighted that a great many people are experiencing personal signs of distress. This is a normal human responses to the pandemic, but one which has highlighted that people with dementia are having normal human responses or signs of distress to the changes forced on them by dementia – rather than BPSD.

Related to palliative care, is Advance care planning, which is more important than ever in these uncertain times. In the months ahead,thousands of people will face the prospect of becoming suddenly and seriously unwell. Distressingly, they will probably have to face being denied health care.

I’m concerned that many people do not have an Advanced Care Directive, mainly because they don’t understand that just because we tell our people what we want does not mean that will happen if its not on a legal document. and many people over 65 are without an Advance Care Directive, creates  serious and probmatic issues as we face the impact of the COVID pandemic.

An Advance Care Directive is important as nearly 50 percent of people who become ill, will not be able to make their own end of life medical decisions at this very difficult time in history,  although it may make no difference at this point as the elderly and infirmed, including people with dementia are being denied medical care.

This is an all too real, sad and sobering thought.

Again, this highlights yet another area we have failed our most vulnerable.

Slide 5: This slide highlights the services available from Dementia Alliance International. In closing, I want remind you of my quote from earlier that clearly states how I feel:

“I am more frightened by the thought of ending up in any type of care than I ever have been of my dementia itself”.

THANK YOU.

About Christine Thelker:  Christine is a board  member of Dementia Alliance international having served as one for a number of years now. She also co-hosts a  number of peer to peer support groups. She is from Vernon British Columbia Canada, and describes herself as bright, fun and adventurous. Who at 59 says, her sense of humour has grown, since her diagnosis. Widowed at 47 and then diagnosed with Vascular Dementia and Cerebrovascular Disease at 56. Christine worked for Interior Health Authority for 13 years in various sites, most loved work was in Dementia Care and End of Life Care. It was here that she felt she did her best work.

Advocating for families and Patients, advocating for better training for workers working in Dementia Care, and although she says things still have not changed, she is hopeful with more people using their voices the changes will happen. She knows firsthand how people’s abilities are stripped instead of embraced and advocating is the only way to make change happen. She also advocated for better working environments for the workers. In June 2020, Christine’s first book was published, For This I Am Grateful, and she continues to advocate and write about the need for a human rights approach to dementia. Christine’s motto since diagnosis is “I’m not done yet”.

DAI APRIL WEBINAR: “ASK THE EXPERTS”

DAI’s next “A Meeting of The Minds” Webinar: ASK THE EXPERTS:

  • Wednesday, April 25, 2018 (USA/CA/UK/EU)
  • Thursday, April 26, 2018 (AU/NZ/TW/JP)

This event is being hosted by Dementia Alliance International (DAI) and is available online as a Webinar. Although it it set in a number of time zones, it is only ONE event.

Ask our experts:

Lorayne Burgess lives with dementia in the UK, and has been an active advocate in her local area, and now becoming active representing DAI. She will be speaking at the launch of a new OECD report on Dementia in London in May. She is 52 and was diagnosed with FTD 3 years ago aged 48. Life is her hobby and living positively is her goal.

Jerry Wylie is the Vice Chair of DAI, and is very active in his local area in Philomath Oregon in the USA, presenting to organisations, raisign awareness and fundraising for DAI. In July, he commences presenting regular educational sessions to medical students. Jerry is an invited keynote speaker for the ADI Conference in Chicago in July.

Maria Turner and her son Rhys Dalton live in the USA, and will share their experiences of the impact of dementia. Maria, from ger perspective as a younger woman who was working in critical care as a nurse at the time of diagois; Rhys from the perspective of a young man supporting his mother, whilst trying to build up his own career.

Ian Gladstone lives alone with demenita in Adelaide, Australia and will share his experiences of diagnosis, living alone with dementia, and his experiences as an advcate and speaker for the last few years. Unless you’ve already met hi, his sense of humour and ability to live so positively with dementia will surprise you.

Alister Robertson brings us a voice from New Zealand, and of the transition from business man, to living with younger onset dementia, and his involvement in New Zealands first Dementia Advisory Group of people with dementia and a recent invitation to join their Board.

Mike Belleville recently was the IT man behind the scenes of our WRAD event, and is als now in a senior role with DAI as our IT Developer. Mike lives with dementia, and hosts a monthly online Tech Forum, to support people with dementia to use technology.

Christine Thelker from Canada, whose background is working in Dementia Care, lives alone and rather than sharing her personal story of being diagnosed with younger onset dementia aged 56, which resonates with so many others, she will touch on something she feels is so important to living more positively with dementia, and a tool many in Dementia-land could utilize. She wil talk about how technology has improved her well being, and reduced her isolation.

About the Webinar

This is your opportunity to listen to a panel of experts with the lived experince of a diagnosis of dementia, from a number of countries. Each panellist will share their story, and the program will be followed by a Question and Answer session, where you can ask questions to the panellists, as well as any other attendees who have dementia.

If you have dementia, you will hear many things you will relate to, and may also hear strategies and examples of how to live more positively alongside dementia, in spite of the daily challenges it throws at us.

If you are a family member of professional (academic or health care professional), this is your opportunity to ask the questions you may have always wanted to ask a person with dementia (if a care partner), a patient or a client, but in your professional or personal carin role felt was not appropriate to ask.

As an academic, you won’t have to go through the process of an ethics application, to be able to engage with our members either!

Please note: this webinar is unlikely to be made publicly available after the event, so to listen and ask your questions, attending in person is your chance to meet people with dementia and ask them your questions. We wanted to make it a very personal and confidential environment for our speakers, to allow them the opportunity to speak openly from the heart.

Follow the link to register or go to our Events page for full details, including times in your city or region.