Terry Green and Tessa Kleissen from UofC attended the Caregivers group to discuss their findings regarding on the affect of Alzheimers on families and spouses. Several of the couples in our Southwood group met with Terry/Tessa last spring. Terry stated they are still interviewing but were having difficulties meeting with caregivers in the late on-set group. They are interviewing both early onset and late onset so they can show differences. They want to set up focus groups to review their findings.
Q How many people are you aware of that have Early On-Set?
A Dr Smith has over 300 people in his database under the age of 65. Not all have been diagnosed with Early On-Set, some are just being seen/tested/etc.
Terry presented their findings at the Alz conference in Vancouver in July and talked about What is life like for those couples, what were the main themes heard from those couples, and what are the needs of the Early On-set group
Key themes included sense of loss for caregivers: loss of spouse/partner/marriage, loss of resources/income, loss of independence. Most support comes from family, not health or government.
Changes in the life of caregivers includes
· now a single parent as the other parent is not able to perform the job of parenting any more
· spending a lot of time planning for the future, and often a future that most couples don’t look at for another 10 or 15 years
· there is a sense of the unreal “this can’t really be happening”
· sense of uncertainty
· a need to learn, about all sorts of things
· personal quality of life is diminished
Changes in the life of the partners/patients
· frustration about what it took to get a diagnosis
· loss of independence including loss of drivers licence
· lack of awareness
· lack of support, very uncomfortable about age appropriate groups
· quality of life is diminished, a lot of emphasis on safety which is disconcerting
· loss of sense of worth
· recognizes a change in their marriage but sees that their spouse takes care of them
· worry about the future
· recognizes a change in their relationship with their children and feel the “wrongness” of that change
Tess asked what would help. Everyone in the Southwood group agrees the #1 issue is a day program. The caregivers work- typically Mon to Fri 8 to 5. They need to know their spouse is safe and engaged in something. Need an activity (age appropriate) based program with people of similar age and physical heath. The program needs to be challenging/stimulating and should include being in the community, volunteer work. There is a concern about the same issues in long term care. Currently people in care under the age of 65 are typically living with and spending their whole day with others who are much older and often frail. In terms of a program, it was suggested there is no need to re-invent the wheel – programs exist but we need to know how to access them. Lots of programs for children and seniors but none for the ages in between.
Q (from Terry to group)– is it hard to get information about Alzheimers? NO, its available on line, from the societies, seminars/lectures. The caregivers are basically well educated, very active group, they can find the info they need. Still some frustration in the caregivers group re Alz Society of Calgary who seem to be quite set in their ways – they offer certain programs and you have to fit in. Luckily, Alz Society of AB much more helpful providing facilitators when WE want including our new Childrens Group which Alz S of Alberta facilitates regularly.
Discussion regarding how useful a health advocate/navigator would be. Who can you call besides a doctor? Lots of the medical help caregivers find is only because we are aggressive in reaching out to lots of different doctors but then you end up with a family doctor, a neuro, a psych…..
Next Steps: Terry/Tessa will be taking our comments re a coordinated strategy for a day program back to AB Health. Some of the caregivers group met with VON who are considering offering something 1 day/week. It is a start, but falls short of what is needed. Need to find funding for a trial program, a pilot project. Maybe a research grant can be accessed “how does (pilot) program benefit those diagnosed with early on set? Potential site is Shawnessy YMCA.
Terry did commit to an update in 6 months. For more info on her research www.ucalgary.ca/greenTL
Some other general discussion regarding home care. Some of our group are now getting help through home care. It was noted that interviews with home care nurses can be very uncomfortable for the partners and one caregiver said her partner will never accept home care. But for those who are getting assistance it is helpful. Self managed care allows you to hire who you want and have a say in what partners do/where they go. Home care agencies tend to have a lot of rules about what they will/will not do.