This is the time of year when many of my colleagues are either volunteering in support of or participating in the Walk to End Alzheimer’s. For some, it is very personal as they have had family members or friends with Alzheimer’s/dementia. Regardless, having a family member with Alzheimer’s or dementia can be one of the most difficult times for any family.
Several years ago I learned about a website/initiative called “The Conversation Project” which was a website dedicated to helping people have those all-important end-of-life conversations. There is even a helpful toolkit people (and healthcare professionals) can download to assist in getting those conversations started. I have mentioned this website with many of the continuing education programs I have taught over the last several years.
Recently I read an article about how the Conversation Project, in cooperation with the Institute for Healthcare Improvement, has developed a subsequent toolkit designed specifically for families of Alzheimer’s and dementia patients.
This particular kit breaks down the conversation into several steps based on the person’s cognitive abilities. Sections of the questions touch on the person’s awareness of their disease and its progression, attempting to learn the person’s wishes for involvement in their treatment. However, if the family member is not able to participate in these conversations, it also suggests that family members meet and complete a questionnaire as the patient would.
- “How did they make decisions?”
- “When did they say something about someone else with Alzheimer’s?”
- “What would this person want?”
The article mentions the importance of completing advance directives at a time when the person is still alert and aware. These helpful documents will serve as guides for caregivers, other family members, and other healthcare professionals.
Over the years we have heard healthcare professionals talk about how difficult it can be to get families to talk about end-of-life wishes. Denial is a challenging thing to overcome. That is why I recommend these toolkits. However, the only thing missing from these toolkits is conversations about funeral wishes. To me, the continuum of care does not end once the person dies. There is a surviving family that goes on after the death. In this regard, funeral services and grief care are part of the continuum of care. Having conversations about funeral wishes is just as important as conversations about end-of-life care.
Helpful Downloads: To help you begin those conversations either with your patients/clients or your own families, you can download these helpful toolkits:
The Conversation Project Starter Kit
The Conversation Project Toolkit for Alzheimer’s/Dementia
Ohio’s Advance Directives
Meaningful Funerals Planning Guide
You can also find helpful information on our dedicated caregiver website, www.thecaregivingtree.com. There are downloadable forms and links to helpful websites, as well as an event calendar listing our continuing education programs.