OTTAWA — The Alzheimer Society of Ottawa and Renfrew County is conducting a study this fall to determine the needs of Ottawa residents with dementia and their family caregivers: What services do they use? What’s missing? What problems do they run into?
“We know the number of people with dementia is increasing at an incredible rate,” said Kathy Wright, executive director of the Alzheimer Society. ”We’re concerned about having enough services so that we can help them stay at home. And yet some of these services aren’t being used. We want to find out why.”
Under-utilized services include respite care and some adult day programs. Meanwhile, other services such as homecare are in huge demand.
The $50,000 study is the most comprehensive dementia needs assessment in 10 years. A report is expected in early 2013. The findings will be used for planning by government and community agencies.
Starting this week, more than 3,000 surveys will be sent to caregivers, community organizations and retirement homes, to be completed by November 2. The surveys will be followed by focus groups.
The survey asks about level of satisfaction and obstacles encountered with services such as assessment and diagnosis, counselling and support, homecare, meals on wheels, day programs and respite care.
Jeff Marier, a full-time caregiver for his mother Mary, who has Alzheimer’s disease, is on the steering committee for the study.
“It’s not an easy system that’s been set up to access services,” he says.
“When you phone nowadays you never get to talk to anyone,” says Marier, a 58-year-old retired public servant. “It’s always voice mail, leaving messages. You have to wait for someone to get back to you. It could be weeks. When you finally do connect with someone, you end up on a waiting list.”
For example, it took him six months to enrol Mary in a day program that provides leisure and social activities for people with Alzheimer’s.
It recently took another six months to get a personal support worker to come to the house one evening a week. “This allows me to get out and meet friends for supper, which I haven’t been able to do a for a year,” says Marier.
He called the provincially-funded Champlain Community Care Access Centre last April. A caseworker turned up in June. The personal support worker finally arrived in late September.
“That’s typical and this is very frustrating from a caregiver point of view. I can just imagine a lot of people saying “I can’t do this. I just don’t have the time to invest in this.’”
Lack of information is another issue, says Marier. He cites three cases he knows where a spouse was diagnosed with dementia.
“The family doctor gives a diagnosis, a prescription and an appointment in six months. They’re not being directed where they can get help. If you’re not directed and you don’t know what exists, you just assume you’re on your own.”
There are about 13,000 people in Ottawa with dementia. That number is expected to double in the next 20 years.
“We don’t want to lose any funding for any service because of people not being aware or because of glitches in the system,” says Wright.
An example of a lesser-used service is the 12-bed guest house at the Perley Rideau Veterans’ Health Centre. It offers overnight respite care, but is occupied just 65 per cent of the time.
Built five years ago in response to family requests, the guest house was a venture by the Perley Rideau, the Alzheimer Society, and the non-profit organization Carefor Health & Community Services.
“We thought by this time we would be inundated and would be planning to build a second one,” says Bob Cerniuk, chief operating officer of Carefor.
Cerniuk speculates that perhaps the rules are too restrictive. For example, the guest house won’t take a diabetic who needs insulin shots. “Hopefully the needs study will tell us,” he says. “Rather than second guessing, we actually get the facts.”
The study also hopes to get a handle on how many people with dementia are in retirement homes.
“In the last 10 years, the number of retirement homes has doubled,” says Wright, adding that this may explain a lack of interest in some programs.
Finally, the study will survey long-term care homes that have secure units designed for people with dementia who are at risk of wandering. In at least one home, the Perley Rideau, the demand for the unit is down.
The Alzheimer Society would like to hear from people dealing with dementia who do not use any services: Contact consultant Nadia Harton at email@example.com.