a family shares the hard lessons of a dementia diagnosis
14 minute read
donna kuzmarov, at home in her côte-st-luc apartment, looking through a family photo album, remembering her late husband, irwin: he died in may of dementia.
pierre obendrauf
/
montreal gazette
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these past several years have been unspeakably sad ones for donna kuzmarov as, gradually but inexorably, she lost her beloved husband to dementia.
irwin kuzmarov was 81 when he died in may at the maimonides geriatric centre in côte-st-luc, where he been since late 2023. but she had started to lose him long before. dementia, donna said, requires “learning to live alone although our loved one is still alive.”
what she describes is known as ambiguous loss — a theory developed by family therapist pauline boss in the 1970s. “someone with dementia is both here and gone,” boss told the gazette, referring to a physical presence remaining when a psychological presence has been lost.
caregivers to people with dementia are often unprepared for the difficulties they face in accessing care, support and other services. donna, whose background is in psychology and counselling and who spent decades with mcgill university’s counselling services, is more resourceful than most.
“it is such a shocking, difficult illness — but there is help in the community,” she said.
donna is grateful for help she was able to source — particularly from the alzheimer groupe inc. (agi), whose services include counselling and support groups for caregivers and a day centre for clients that offers programs including exercise and music therapy.
“our goal is really therapeutic,” said marivic aplaon, a senior counsellor with agi. “sometimes, even if they are not sure whether their family member has dementia but they are seeing symptoms, we help them find resources until they have a diagnosis.”
referrals to agi can come from a doctor’s office, a clsc or through word of mouth. “we provide supportive strategies to help their loved ones and also provide emotional support to caregivers,” aplaon said.
and once irwin had been admitted to maimonides, nurses and orderlies — in quebec they are called préposés aux bénéficiaires or pabs — looked after him with great kindness and caring, donna said. irwin had practised medicine for decades as a urological surgeon beloved by his patients — and the maimonides staff called him “doc.”
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donna called them angels.
despite how busy they were, she said they took time to greet her husband, maybe lightly touch his shoulder. three nurses in particular “were so wonderful and so caring. i have a special place in my heart for them.”
the nurses and pabs treated her father “with so much dignity and respect,” said alyssa kuzmarov, one of the couple’s three children and the only one living in montreal.
“they have a really special way of making a very heavy situation just a bit easier to handle, with their kindness and with laughter. they often joked around with my father and that helped a lot. or they were just thoughtful and sensitive,” she said. “they have such a hard job and so many of them bring such care to what they do.”
donna and irwin married in 1969 and their first 50 years together were happy ones: they loved each other, their family, their work — and music. she had studied piano and he used to sing in high school and at university; when they got together, “music was one of the connections we had,” said donna, 79.
as they raised their children, “the kids always heard music in the house.” she and irwin founded the musical chairs, an all-volunteer group of devoted amateur musicians who, for decades, performed folk and rock ‘n’ roll songs at venues including hospitals, seniors’ residences and long-term care centres and at benefits. “music is a very special way of communicating with people,”
irwin told the gazette in a 2016 interview about the musical chairs.
and music would continue to play an important supporting role for both in the unremitting dementia journey that changed their lives so profoundly.
music played an important supporting role for donna kuzmarov and her husband, irwin, in the dementia journey that changed their lives so profoundly. here, in 2016, they performed in a benefit concert as part of the musical chairs, which they co-founded. photo by pierre obendrauf/montreal gazette
not long after they retired in 2019, there were early signs that all was not right. irwin would become very anxious, for one. on holiday that year with their two sons and grandchildren, “he got lost — and we got worried,” donna recalled.
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their family doctor did a cognitive assessment and, with borderline results, irwin was referred to the memory clinic at the jewish general hospital: there he received a dementia diagnosis.
it would have been helpful for a social worker at the memory clinic to follow up and prepare them for what might come next, said alyssa, a social worker herself, a teacher and a filmmaker.
“it’s so frightening, such unknown territory,” she said.
“we were so lost.”
her father had always been a social person, someone outgoing who played golf and exercised at the y. with the onset of the covid-19 pandemic in 2020, “he really lost his whole social world,” alyssa said. “he didn’t get the whole zoom thing and he retreated into himself.”
the type of dementia he had caused him to experience hallucinations and he’d call her, sometimes several times an hour, saying strangers were in the house, she said. twice the hallucinations necessitated emergency room visits.
at one point, “i had to march my mother to the clsc and demand a social worker,” she recalled. “i was insistent. i said: ‘we need help.’”
alyssa was able to advocate for her father, “but i can only imagine what it is like in families with no one to speak up for patients.”
not everyone realizes that clsc social workers have an important role when a family faces a dementia diagnosis. should placement in public long-term care become necessary, for instance, the clsc must be involved. initially, the social worker does what is known as a bio-psycho-social assessment and evaluates what services are needed. in the case of the kuzmarovs, a respite worker for donna was put into place and irwin was referred to the st. margaret residential day centre. a clsc referral is required for that centre, which provides activities and therapeutic programs including music, art and exercise.
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irwin was also spending a day a week at agi and donna sourced a third program — the l’espoir day program, which is run by the cummings centre. anyone can refer someone 65 or older with a cognitive impairment — neither an official dementia diagnosis nor a medical or clsc referral is needed — and cummings does its own assessment to make sure potential participants meet its eligibility criteria.
“initially he said he didn’t need the groups — but he would come out smiling,” donna recalled. “he enjoyed them in his own way, he took part in a lot of the activities and there were really good leaders.
“i love groups: to me, they are so meaningful. it is why i researched groups for people with dementia for irwin — and he responded positively. it helped so much with this difficult illness — to not be alone but with others experiencing the same challenges.”
and as it had always been, music remained a comfort. during sessions, agi music therapist kayley patterson accompanied irwin and donna on musical instruments as, together, they sang songs both knew and “we did improvisations with her and talked a bit about what it was like to have this difficult disease,” donna recalled.
“it was helpful to spend 90 minutes every week sharing the details of the illness — the shock of it,” she said. “the songs were therapeutic because they were familiar to us.
“kayley would be supportive of me, too. i would often find songs having to do with sadness and loss — songs like the last thing on my mind, by tom paxton, or changes, by phil ochs—and they were an outlet for sadness i was feeling.”
later, once irwin had been admitted to maimonides, donna was grateful to be able to continue music therapy on her own at agi with patterson.
music therapy “is very personalized, very much experiential,” patterson explained. “in a session, maybe someone wants to explore their feelings about being diagnosed with dementia, so we might play a song and talk about the lyrics. we might write a song. we might improvise for 10 minutes at a time, activating creativity and tapping into strengths at a time when that is rare. rhythm and music are among the last things to go when you have dementia.
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“my approach is not so scientific. it is more esthetic — trying to find beautiful experiences for people. maybe they have lost words but they can use the music to express themselves and thereby feel seen and heard.”
for her parents, agi was “a miracle place,” alyssa said.
donna kuzmarov was grateful to be able to continue music therapy on her own with alzheimer groupe inc. music therapist kayley patterson, right, once her husband was admitted to maimonides. photo by pierre obendrauf/montreal gazette
but irwin’s decline continued. in august of 2023, he got covid. “i had to rush him to hospital,” donna recalled. “he was in isolation for 10 days at the jewish general “and he came out a different person. he could no longer walk and his cognition was so, so changed.”
studies have shown that, for older people, negative effects of hospital admission begin immediately and progress rapidly and “the ultimate outcome for many hospitalized elders is loss of home and, ultimately, loss of place,” as one 1993 study in the annals of internal medicine stated.
“i feel like he could have walked again,” alyssa said of her father. “the problem was there wasn’t enough staff and they were afraid he would fall. at some point, it would have come to placement — but i think he could have stayed at home longer if he had not lost his ability to be ambulatory.”
irwin spent two months on three different floors at the jewish general, then two more months at hôtel dieu hospital.
“it was a long haul at those hospitals,” donna said. “but they were good to him. the nurses and pabs are so amazing.”
doctors at the jewish general were adamant that irwin could not return home. given three possible placements to choose from, the family put maimonides at the top of their list: on dec. 23, 2023, the call came that a bed was available for irwin.
the first year at maimonides, “he was responsive,” donna said. “he was eating by himself — and he liked the food.” he liked to be “out in the hustle and bustle of the floor” and would move himself along in his wheelchair, using his feet. “he was very determined. he never wanted to stay in his room.”
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music continued to be a part of their lives at maimonides. “i took him to musical activities; sometimes they brought music to the floor,” donna said. on sundays, there were concerts, outside in the garden in warm weather, and dozens would attend — patients, caregivers and family members. “people tapped their feet or clapped their hands. there was a sense of community.”
gradually, though, irwin withdrew and became less engaged; his speech diminished and, in the last six months, he could eat only puréed foods. but on the last day he was conscious, he strummed his guitar one final time, alyssa said.
“he was determined right until the end of his life.”
at his funeral, two songs which music therapist patterson had recorded of irwin and donna singing were played: a gentle and poetic hebrew love song called erev shel shoshanim and the rose, the amanda mcbroom song made famous by bette midler.
as she adjusts to widowhood and moves through her grief, donna wants her deep appreciation for the support and kindness both she and her husband received to be known. she chose to share their journey to express that gratitude — and in the hope it will help other families facing a similar diagnosis to understand the challenges that lie ahead.
“i have been so moved by the care at agi and maimonides all through this process,” she said. “i am forever grateful.”
dementia requires “learning to live alone although our loved one is still alive,” donna kuzmarov explained. photo by pierre obendrauf/montreal gazette
dementia diagnosis can take up to 28 months
among the findings of the first major report from the brainwell institute, a canadian think tank established in 2024 to focus on dementia and brain health:
- the average wait time for a dementia diagnosis in canada is among the longest in g7 member countries, according to mind the gap: closing the care divide for canadians with dementia, released in july. national averages from onset of symptoms to formal diagnosis range from 21 to 28 months. average wait time for a diagnosis of cancer or heart disease, on the other hand, is measured in days. and unlike those conditions, no clear pathways are available for people living with dementia or their families to get the care and support services they need.
- more than 770,000 canadians have some form of dementia — a figure expected to have risen to nearly a million five years from now. waiting lists for public long-term care are long and getting longer.
- estimates for high-income countries like canada suggest that half of all people with dementia receive neither a diagnosis nor appropriate support and benefits. under-diagnosis is especially prevalent among certain groups, including racialized communities and indigenous peoples. and a recent study by mcgill university researchers found pervasive differences in the dementia care received by quebecers in affluent and poorer neighbourhoods.
- research on risk factors related to dementia has advanced significantly. some of these factors, such as aging or genetics, cannot be changed but a number of lifestyle factors which increase dementia risk are potentially modifiable: later-in-life hearing loss, smoking, high blood pressure, obesity, physical inactivity and social isolation are among them. the 2024 lancet standing commission report on dementia prevention identifies 14 risk factors it says account for about 45 per cent of dementia cases.
- finding follow-up care is often a struggle because comparatively few physicians have experience treating people with dementia. a dementia diagnosis is often made by a family doctor, yet just 41 per cent of canadian family doctors report feeling well-prepared to manage dementia in the community. in norway, the figure is 69 per cent; in the u.k., 63 per cent.
- about one-third of canadians receive a dementia diagnosis in hospital, usually after a crisis has led to an er visit or admission. “hospital environments are very confusing and stressful for someone with dementia, exacerbating disorientation and often leading to longer hospital stays and worse health outcomes in the long run,” the brainwell report states.
- in canada, 61 per cent of people with dementia remain at home. yet just 43 per cent receive a home care assessment within six months of diagnosis — and, of these, only 58 per cent eventually receive community and home care services. forty-three per cent later move into long-term care, often because they didn’t get enough support at home.
“there is, unfortunately, a big lack of public awareness about the signs and symptoms of dementia as well as how the disease progresses,” said claire webster, founder and ambassador of the mcgill university dementia education program. photo by pierre obendrauf /montreal gazette
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‘how can a doctor make a proper diagnosis of dementia in 10 minutes?’
things have improved somewhat in the 20 years since her mother received a dementia diagnosis and claire webster was told: “good luck, mrs. webster.”
but there is still a long way to go, says webster, founder and ambassador of the mcgill university dementia education program.
she regularly speaks to health-care professionals and students and to corporate organizations. she gives a mandatory talk to first-year mcgill medical students about helping people to navigate the journey of dementia and access community resources, and about the importance of providing adequate information on dementia in language that patients and care partners understand.
when it becomes clear that someone is having difficulty with tasks of daily living, their doctor should fill out a form requesting involvement of a clsc social worker, webster explained. sometimes the doctor has the family fill out the form.
it can take up to six months for a clsc social worker to do an in-home evaluation, she said. “so imagine you are struggling and you have waited six months and this is for the first evaluation. then it has to be processed.”
the push in quebec is for family doctors to be the ones making a dementia diagnosis, webster said. but they are expected to see six patients every hour. “how can a doctor make a proper diagnosis of dementia in 10 minutes?”
not all family doctors are equipped to make a dementia diagnosis, she said — and not everyone has a family doctor. and a referral to a medical specialist — a neurologist or geriatrician — can take 18 months.
webster, a certified dementia care consultant, is also the founder of caregiver crosswalk inc., a consulting firm that provides education and support services to caregivers of people with dementia; she helps families to understand the signs and symptoms of dementia and its evolution. “some come at the beginning; others come when there is a crisis,” she said.
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“there is, unfortunately, a big lack of public awareness about the signs and symptoms of dementia as well as how the disease progresses,” she said. “people think dementia equals memory loss only — but that is not always the case.”
many don’t realize, for instance, that dementia can cause a significant change in personality and result in someone becoming verbally and physically aggressive or developing paranoia and hallucinations, webster said.
if people describe to her how a family member has become aggressive and say they have not consulted a family doctor about the symptoms or don’t have a doctor, “i ask if they fear for their safety. if they respond ‘yes,’ i say they must immediately seek medical attention and that means going to the er.”
the decision to have a loved one placed in long-term care is “heart-wrenching,” webster said. “it causes so much grief and sadness for the family: i spend a lot of time reassuring them … and helping people navigate this new reality.
“the sooner you start becoming educated on this disease, the better,” she said. “the waiting list for long-term care for the public system can be two to three years. the earlier you prepare and start thinking about what is next, the better.”
where to get help: from activities to respite care
the alzheimer groupe offers a range of activities for people living with dementia and their families. call 514-485-7233 to learn more.
the alzheimer society of montreal offers services depending on where people are in their journey, said marie christine le bourdais, director of programs and services. “this includes respite and stimulation at home in the later stages. in the early stages, we want people to get out and socialize.” call 514-369-0800. the montreal society also partners with the alzheimer society of canada on a tool called firstlink, in which families with a diagnosis are contacted directly.
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the contactivity centre offers a day program for people with early-stage dementia and memory loss. it also offers a support group for spousal caregivers. call 514-932-2326, ext. 206, for information.
the l’espoir day program, a specialized service for older adults with memory loss or dementia, is offered by the cummings centre. it has groups in english and french and there is also a russian group. call 514-343-3514 or email intake@cummingscentre.org.
mcgill cares is a free online webcast series from mcgill which provides support and education for people caring for loved ones with neurocognitive disorders such as alzheimer’s disease. hosted by claire webster of the university’s dementia education program, it features interviews with experts on topics relevant to dementia caregiving. past episodes can be viewed.
this article was originally published in the montreal gazette on november 8, 2025.
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