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”.