In June of 2006 Fiona Sudbury the Director of Care at Broadmead Lodge in Victoria asked me to help them prepare a course on “Dying with Dementia”. I remember well saying to Fiona that the gerontology community, the hospice palliative care community, and I personally were not ready to write that course. After a few months, another phone call with Fiona, and a day in my favorite library at Hood College…. I started to research the topic.
Imagine my surprise when I discovered that best practice in dementia care was in harmony with best practice in hospice palliative care! We started working the next month!
It was my privilege to work with Janice Robinson, Al Vandergoot and the incredible team at Broadmead, to develop their education program “The Dementia Difference: A palliative approach for people dying with late stage dementia.” (See references below for two articles published in Journal of Palliative Care reviewing the program and the preliminary outcomes.)
Working with the caregivers and staff at Broadmead Lodge was significant in my professional growth. I was blessed by the cross-pollination of ideas. I was inspired by the expertise of caregivers who were highly skilled and extremely dedicated to excellent care for people with dementia.
Since that time, I have taught a few sessions titled “Dying with Dementia”, highlighting the research on best practice in caring for people with late stage dementia. This past week I was honoured to present at the annual conference of the Alzheimer Society of Manitoba. Once again I was impressed by the excellence and committment of individuals involved in dementia care and education.
Caregivers who attended the workshop were thrilled to learn more about a palliative approach in caregiving.
One theme that seems to emerge routinely, “We provide excellent care following admission, we give great care in the last hours, but it is in the weeks before death, when we are less able to determine when death will occur, that we struggle to provide the best care.”
It is clear that people desire more information, and desire practical information.
Two favorite resources include Bern Klug on the “Ambiguous Dying Syndrome” and Volicer’s artcile which he did for the Alzheimer’s Association of Florida. BernKlug does a great job of identifying how difficult it is to die with chronic disease when death is certain, but at an uncertain time. Volicer does an incredible job of pulling together research on best practice in end stage dementia. After all the hunting I did for research, his one article seemed to summarize everything else that I found.
When I wrote the text “Essentials in Hospice Palliative Care” it was my desire to provide a section linking HPC and Dementia Care. I appreciate input on this topic, please feel free to write.
All the best to you in caregiving!
Bern-Klug, M., (2004), The Ambiguous Dying Syndrome, Health & Social Work, (29:1/2004; 55-65).
Volicer, L., (2005), End-of-life care for people with dementia in residential care settings, Alzheimer’s Association.
And….of course, the articles about the “Dementia Difference” course at Broadmead Lodge:
Gnaedinger, Nancy, Murray, Katherine, Robinson, Janice, “Preliminary Outcomes of “The Dementia Difference” workshop at The Lodge at Broadmead, Victoria BC”, Journal of Palliative Care, (26:2/2010; 130-133).
Gnaedinger, Nancy, Murray, Katherine, Robinson, Janice, The dementia difference: A palliative approach for people dying with late-stage dementia. Journal of Palliative Care, (24:4/2008; 274-276).