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CANADA: 'Slipping Through The Cracks' (Keywords: Dementia Alzheimers Picks) Caregivers and researchers struggle to find support and raise the profile of the hidden number of dementia sufferers. SANDRA COULSON, London Free Press Lifestyles Reporter 2004-05-03 02:01:56 By dint of hard work, families and medical professionals have put Alzheimer's disease in the public eye in the last two decades. But its profile has overshadowed other forms of dementia that can be equally devastating -- perhaps more so because of a lack of specific services and supports for this smaller group of people. Ironically, a London neurologist skilled in diagnosing dementias believes the number of cases of Pick's, Lewy body, Creutzfeldt-Jakob and other diseases is greater than assumed. Dr. Andrew Kertesz says it was once thought 80 per cent of degenerative dementia cases were Alzheimer's. "No way," he says. He believes Pick's alone makes up 25 per cent of cases. Family members say supports aren't geared toward patients who are often middle-aged and physically able. And doctors are hampered by lack of research funds. The cognitive neurology unit at St. Joseph's Health Care, where Kertesz works, is doing the first drug study in North America -- and the second in the world. "Our loved ones are slipping through the cracks," says Shannon Byron, whose 59-year-old father, George Byron, has Pick's. "Every person I've met in the field that is a professional has been excellent," says Rob Fletcher, whose 54-year-old wife, Audrey, also has Pick's. "(But) sometimes the system isn't right." Shannon Byron has cared for her father since 1998. That year, she graduated from university in Toronto and returned to London to live with her recently widowed father. She discovered he was acting peculiarly -- struggling to speak, obsessive about exercising, impulsive with purchases and donations, mischievous like a child. After university, she enrolled in a one-year course at Fanshawe College. But on her last day of classes, she came home to find the stove on fire. At that point, she became her father's primary caregiver and has not pursued a career. Audrey Fletcher was diagnosed more than a year ago, but Rob says he noticed changes seven years before. An employee of a union with some flexibility in work hours, he often phoned home to check on Audrey. One time when he couldn't reach her, he dashed home to find the laundry room filled with suds. "You can't get angry with them, (but) you get frustrated," he says. His late brother's wife, Joan Fletcher, has moved here from B.C. to help care for Audrey. Rob says his wife looks great, but adds, "She's not the same person, the companionship is kind of gone." Getting a proper diagnosis is often the first hurdle. "Getting a diagnosis is a problem because physicians don't see it often enough to recognize it," says Magdalen Carter, a social worker at the McCormick Home's Alzheimer outreach services. But when people with other dementias are among the program's real Alzheimer's clients, "they stick out like a sore thumb," she says. That's how George Byron was diagnosed with Pick's. He was originally thought to have early-onset Alzheimer's. But Carter asked Kertesz to re-assess him. A CT scan and an MRI showed a pattern of brain atrophy that indicated Pick's. Different dementias affect different parts of the brain. Pick's, for example, attacks the frontal lobe, causing a loss of inhibition that leads to misbehaviours. Kertesz says dementias can also be determined by looking at the kind of protein that has accumulated in the brain. Shannon Byron also had a challenge getting home care for her dad. When she first called the Community Care Access Centre, she was asked about his ability to do regular daily activities. He was capable of those; his problem was his psychology and social behaviour. With Carter's intervention, the CCAC came through with assistance. Some dementias strike earlier than Alzheimer's tends to. That age gap sets off several problems for caregivers and community supports. "A number are still in the workplace and this is where the dilemma comes in because often they have to give up their employment," says Laura Hillier, education co-ordinator for the Alzheimer Society of London and Middlesex, which also helps people with other dementias. "They are then becoming progressively more dependent on family to look after them, so if the spouse is out earning a wage, this is a horrendous dilemma . . . They quit their job to become a permanent caregiver and that has tremendous financial implications." Few are at the point in their financial plans where they can afford $1,500 to $2,000 a month for long-term care, she says. "To get assistance, I will have to be broke and destitute," Rob Fletcher says. He says divorce has been suggested to him as a financial solution. He won't consider it because they've been together since they were 13. Shannon Byron expects her father's savings will be exhausted in two years. George now lives in the McCormick Home and Shannon pays for a private personal care worker to give him extra help. Long-term care facilities are also geared to much older dementia patients. Shannon says her father at first hated the Alzheimer outreach services day program. He eventually came to like it a lot -- and that created another problem. Last fall, he moved into the McCormick Home as Parkinson's-like tremors invaded his body -- an occasional complication with some dementias. But the day program is for people living in the community, not in nursing homes. Shannon got around that by paying extra to enrol George in the extended hours that run daily after the day program. But he can get in only because it isn't currently filled with people from the community. "(Support) is the most difficult area and one we as care partners struggle with," admits Hillier. Carter has set up a Pick's support group, which has about 10 family members coming from as far as Hamilton. But she worries many people who could benefit from the group don't know about it. "Those folks are struggling out there and not knowing what's causing these (behaviours) and they may end up in the criminal justice system and they may end up in the psychiatric hospitals and places that are not most appropriate for them," she says. Carter knows Pick's patients who have been sent from nursing homes to the psychiatric hospital because the home was not able to handle them. Shannon doubts the McCormick Home could handle her dad if the Parkinson's-like symptoms hadn't put him in a wheelchair. "Part of my job as education co-ordinator is to go into long-term care facilities and provide in-services," Hillier says. But not much literature exists for training about other dementias. Sometimes staff have turned to the Pick's support group to learn about behaviours and strategies that have, or haven't, worked. It adds up to a huge burden for families and the professionals who want to help them. "Everyone I met has more courage than I could ever imagine ever having," Rob Fletcher says. MORE INFORMATION For information on other dementias: - Go to http://www.alzheimer.ca ... click on "Alzheimer Disease" and then "Related Dementias" - Call Laura Hillier at the Alzheimer Society of London and Middlesex at 680-2404 SOURCE: London Free Press, Canada http://www.canoe.ca/NewsStand/LondonFreePress/Today/2004/05/03/445029.html * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn