From time to time Elder Voice features programmes or products which we think provide something unique and valuable to Seniors, Family Members or Caregivers. This month we want to let our readers know about Paul’s Club.
“Paul’s Club is a social and recreational day program that caters specifically to the needs and interests of people who are living with Early Onset Dementia (diagnosed before age 65),” says Nita Levy Executive Director of Paul’s Club here in Vancouver. “The club, opened on September 4, 2012, is the only one of its kind in Vancouver. Currently we are open three days a week from 10 am to 4 pm. We are led by our program director,Chelsea Redburn, who has a degree in Recreational Therapy from Douglas College.
“The impetus for starting Paul’s Club came from our experience of looking for help for my brother in law (Paul), who lives in England. He was diagnosed with Early Onset Alzheimer’s Disease at the age of 62. We found that many of the programmes for people with dementia were oriented towards older people. The needs of people like Paul are different. After much searching, we found a social and recreational day program that had been developed to cater to younger people This program has enabled my brother in law to remain socially engaged, stimulated, and physically active. It has also provided the first respite that my sister was willing to access.
“Because this program has had such an overwhelmingly positive impact both on Paul and my sister, my husband and I made enquiries in Vancouver to see if there were any similar day programmes here. We were advised that there were none due to an absence of available public funding, not an absence of need. We decided we had to start one.”
Paul’s Club members are physically fit, active and other than their dementia are healthy.They are on average 20 to 30 years younger than the age group of other Adult Day Programmes.
As our name implies, we are set up as a club, and our participants are members, not clients. Paul’s Club recognizes and draws on each member’s individuality, their interests, hobbies and life experiences. An essential element of Paul’s Club, that differentiates it from other Adult Day Programmes, is that the members help determine what activities they want to pursue. So far this has included weekly yoga; drumming; singing; some line dancing; daily ping pong; foosball; working out on exercise equipment; visits to the Aquarium; Science World; the Art Gallery; the Library specifically to access music CD’s; daily newspaper based discussions on current affairs; socializing over coffee and muffins at the beginning of the day and socializing over lunch; walking in the afternoons and always stopping to sit down and have an ice cream before our very social walks are concluded! We have even made a foray into gardening.
Catherine, one of our Member’s spouses, typifies the enormity of what so many of the caregivers are facing:”The significant devastation of early-onset Alzheimer’s is somewhat different from late-onset especially in the area of family finances. For example,I cannot return to work as I would need before and after club care and also care on the other days of the week. …going to Paul’s Club has brought (John, 58) out of his shell and I think he feels more “normal” and is much happier. I would think his participation has even slowed down this devastating disease.
Paul’s Club is not funded by the government and needs help to continue to provide its service to members. Please consider helping them out: http://www.gofundme.com/32dwks. Paul’s Club can be reached at firstname.lastname@example.org, 778 558-1894. www.paulsclub.ca
Early Onset Alzheimer’s Disease
It is estimated that 5% of people with Alzheimer’s have what is called early onset, defined as starting before age 65. Alzheimer’s has been seen in people in their thirties, but the majority of early onset sufferers started in their fifties.
Whereas the symptoms and progression of the disease do not vary according to age of onset, the challenges do. This begins with diagnosis–it may take longer to be diagnosed because it is not suspected by family members, victims themselves or professionals such as physicians. A first clue that something is wrong may be that the person doesn’t seem or feel quite right, they might start making mistakes at work that are uncharacteristic of them, or get confused about simple tasks at home. Sometimes symptoms such as confusion, problems with decision making, memory loss or motor retardation that are more easily picked up as dementia in an older person may be attributed to other factors such as lack of sleep, depression, and stress in a younger person.In fact the symptoms of these do often resemble Alzheimer’s symptoms and need to be ruled out, but they may actually be early onset.
Other issues which are more relevant to people with early onset dementia include the following:
- Employment: Early onset sufferers are often still working. They have not built up their retirement funds or reached their full earnings potential. In the early stages, they may wish to keep working and will need support from co-workers and supervisors. They may be able to switch to simpler tasks or work reduced hours. The loss of their job and colleagues is one more huge loss with which they must cope.
- Spouses: Spouses of younger people with a progressive disease often feel cheated out of a lifetime with their partners, making them more resentful and angry. As well, their are fewer resources for them. Support groups for spouses are often composed mostly of older spouses who no longer have children at home, are not working, etc. Spouses may also be still working and feel they have to choose between their partners and their careers. They also become the sole supporters of the family and the family income is reduced by half or more.
- Children: The children of someone with early onset dementia may be in their teens or younger. They still need fully functioning parents. They may be ashamed or embarrassed in front of their friends or in public by some of the symptoms of their parent. It is hard for them to understand or accept that a disease for which there are few physical symptoms may be causing these behaviours. They also may end up taking on caregiving tasks. This sets them apart from their peers who don’t have this kind of responsibility.
- Future Planning:The person with the dementia will have to deal with preparation for the time when they are not able to parent, to be a spouse, and for making financial arrangements for their family as well as their own care. The grief that they experience encompasses the loss of not being around for the growing up of children and missing children’s milestones, and not growing old with their spouse.
- Age appropriate resources: There is a dearth of age appropriate activities and care options for younger sufferers of dementia.The residents of care facilities and assisted living residences and participants in Adult Day Centres have an average age in their 80’s so not only is it a different age cohort,they are often in much better shape physically with more energy and may not have an outlet for that energy or a way to sustain themselves.
If you suspect that you or someone you know may have early onset dementia, it is extremely important to have a diagnosis as soon as possible. Understandably it will be difficult to know, but you will need the time to prepare yourself and your family for what is coming. You will need to begin to find the appropriate resources and support to create a strong network that will carry you on and ease the burden as the disease progresses.A good place to start is the Alzheimer’s Society and your family doctor. Diamond Geriatrics has professional counselling available for you and your family members to help you all with the practical and emotional issues which you will encounter.