Help and hope on the dementia journey

Help and hope on the dementia journey

By Richard Walker

Merle and Keith Snell, who has Alzheimer’s.

Keith Snell is fit as a fiddle, a spry 84-year-old who still loves going for a daily walk. At this rate, he might live to 100, wife Merle wonders.

And with that comes a world of worry. Because as physically well as Keith is, he has Alzheimer’s. He can go for a walk, but can’t make a cup of tea. He can wash the dishes, but can’t put them away in the right place.

Merle, 83, carries that load, and she also carries fear for the future. Unlike her husband, Merle uses a walking stick and has health issues including macular degeneration.

“I do wonder what will happen in the end because I feel that he is fit and able,” she says. “All he has got is Alzheimer’s and cannot remember, and I have a feeling he could live to be 100.

“Whereas I don’t know that I could. And so I don’t know what to do.”

She also has a more immediate question, as she emerges from a harrowing few months that coincided with her and Keith moving into a Hamilton rest home.

Keith, diagnosed with Alzheimer’s three years ago, had just had his licence removed, and the couple both got Covid before the shift. Merle was laid low by the illness, and family rallied around to help.

The couple moved in on November 10, but in early December Merle was hospitalised with chest pain – concerning because she had had a heart attack a few years earlier. Further hospital stays followed, with respite care found for Keith elsewhere in the rest home complex.

At the end of all that, Merle is exhausted. And her question is: who cares for the carer? In her own case, she has family help, but she thinks carers are often not given enough support.

She describes a detail from the past few months. When she was sick in bed, Keith would appear from respite care, offering to make her a cup of tea.

“I’d say yes. So he would walk from our bedroom to here [the living area], and he couldn’t remember. And then he would come back and say, ‘What was I going to do for you?’ And I’d say, ‘you were going to get me a cup of tea’. And then he’d come [through], and perhaps put the kettle on, and then he would come back and he wouldn’t have been able to find the teabags.”

In the end Merle would get out of bed to make the tea.

Speaking in the couple’s tidy rest home villa, while the sun streams in, Merle occasionally gets emotional at the recollection of those tough months and also at the support from her extensive family and friends.

“Honestly it’s been dreadful,” she says through tears. “He’s so fit. But he’s got this horrible dementia.”

Merle and Keith Snell, who has Alzheimer’s.

In New Zealand, 8% of those 65 and older live with dementia including Alzheimer’s. That percentage is projected to rise over time, with potentially more than 167,000 New Zealanders afflicted by 2050.

Some hope comes from research into delaying onset and lessening the disease’s dreadful impact.

And some comes from community support, both from Dementia Waikato and from two remarkable women volunteering their time and expertise.

One, Suzy McPhail, offers art and music classes for people with dementia, and a monthly lecture series for carers, along with a range of social events.

The other, Robyn Riddle, started a long-running support group for women carers about 14 years ago, meeting in the evening so those with jobs could attend. She also started a walking group at Hamilton Gardens about 10 years ago. Both are still going strong, with Riddle continuing to run the support group.

Riddle has a wealth of experience. She was a social worker for Mental Health Services for Older People, and for a while chaired Alzheimer’s Waikato, a forerunner to Dementia Waikato. To Riddle’s regret, the connection with Dementia Waikato has weakened, making her group more reliant on word of mouth referrals.

Beyond support groups, further assistance comes from funder DSL (Disability Support Link), which pays for the likes of day groups for people with dementia, and respite care, based on needs assessments.

Riddle recommends people get a referral to DSL when diagnosed, even if they are still independent. It provides a baseline that means later, when things are deteriorating, a comparison can be made.

A doctor’s referral, whether GP or specialist, is best, though people can self-refer, she says.

Diagnosis can also come with a referral to Dementia Waikato, which provides a range of services.

Senior dementia adviser Janine Appleby says the organisation’s role is to provide education, support and advice, and navigation through the dementia journey.

Its contracts with Te Whatu Ora are around providing support after diagnosis but she says a big part of their work is responding to public inquiries. “People saying, ‘I think Mum might have a dementia’, and then we’ll walk them through why they think that, what that process is for getting an assessment and things like that, and how to work through that process.

“And assessment is really important, because memory loss can be a sign of other health conditions as well, not just dementia, so it does need to be properly assessed.”

The organisation offers monthly care partner support groups around the region, and in Hamilton also offers a cognitively stimulating socialisation group for people with dementia.

Suzy McPhail cared for her mother, Marguerite, who had vascular dementia.
MARK TAYLOR / Waikato Times

Suzy McPhail has first-hand knowledge of the disease after caring for her beloved mother, Marguerite, for five years. She shifted Marguerite up from Dunedin and found a nearby cottage for her on their rural road outside Hamilton.

McPhail stopped work so she could support Marguerite, who had vascular dementia. “I was fiercely proud of her and how she used to be, so I wanted her to still be like that, dressed beautifully, and all those things that she would have cared about,” she says.

“I used to take her out, make sure she was dressed beautifully and take her out every day for a cup of tea, or a coffee at a cafe. And I knew that ultimately, she wouldn’t remember, but I would know that we’d done it.”

But in 2013, when Marguerite was starting to forget people but still remembered her daughter, she had a fatal heart attack.

During those five precious years, McPhail discovered how hard it was to access help.

“I think because I lived in the country, it wasn’t obvious that there was a lot of things on for people such as her, who still had so much to give.”

Suzy created a calendar from works created by those in her art class.
MARK TAYLOR / Waikato Times

Now she is doing something about it.

A singer and an artist, she decided to run classes to help people with dementia. It’s mostly men in the fortnightly art class, and she has seen them form enduring mateships despite the dementia.

The weekly music classes can take up to 30 or 40, and partners can stay as well.

She says the art class keeps participants calm and concentrated, whereas the music is more active and uplifting. “The music is of course memories of music long gone. And it touches people with dementia differently.” Some who can’t speak may be able to sing a whole verse. Others may only hear the beat.

She has a theory why she gets mainly men. She thinks male carers tend to want to fix a problem, and tend to lock themselves and their wives away to protect them, whereas female carers, perhaps because of their mothering role in life, feel confident bringing their partner to classes.

She also holds a social function every two months, including a summer concert, a winter dance and movie outings.

And she runs a monthly lecture series called Restore for carers including those whose partners are in care or have died.

“I’m hoping that we can get more people to be aware of what there is in the community, because it’s not easy to find it,” she says.

In memory of Marguerite.
MARK TAYLOR / Waikato Times

Faced with the rising tide of dementia, there are simple things people in the community can do to help.

Vanessa Burholt, director of Auckland University’s Centre for Co-Created Ageing Research, says there are key sticking points for people living with dementia and for their care partners.

“One of the major ones is stigma and ageism and how society includes or excludes people with dementia.”

Being supportive can include the likes of adequate signage, accessible transport, and toilets easily available in the community. It can also be as simple as staying patient with that older person in the queue ahead of you fumbling with their change or trying to remember their pin number.

In some countries, shops display dementia-friendly stickers, meaning people might be able to access staff toilets, and staff are trained to help, says Burholt, whose centre works with people living with early stage dementia to help shape its research.

Vanessa Burholt
Unknown / Supplied

A risk factor for dementia is isolation and loneliness, she says.

People can start dropping out of community groups, out of embarrassment or awkwardness. “Maybe, as a society, if we were a bit more accepting of these things it would encourage people to stay engaged for longer.”

Often partners are older and may face challenges with physical tasks like helping someone shower. Support for those people is likely to be more limited in rural areas.

Similarly, there can be challenges around getting respite care.

“On the whole, I think a lot of care partners are expected to get on with it themselves and come up with the solutions to the challenges they’re facing every day unless they’re one of the lucky ones that has got a support group.”

She says care partners often worry about something happening to them, and the impact on their loved one. They can take practical steps like putting a so-called “life tube” plastic cylinder with important information about the person with dementia in a place like the fridge, potentially by filling in a downloadable form. A sticker on the fridge door then alerts the likes of police or ambulance service in the event of an emergency.

Lynette Tippett
Unknown / Supplied

When it comes to the future, a measure of hope comes from Lynette Tippett, who is the director of a longitudinal New Zealand study called the Dementia Prevention Research Clinics. It has about 400 people enrolled, including 250 who have been through the two-year follow-up.

Tippett says a major review paper demonstrated there were 12 modifiable risk factors that accounted for 40% of the risk of developing dementia, including the likes of excessive alcohol consumption, low education, hypertension, smoking and hearing impairment. So there’s good reason to have optimism around addressing risk factors by lifestyle interventions, quite apart from any possible pharmaceutical advances.

She says one of the most interesting things in their research is around social connection and social isolation. “Whatever you try, in terms of interventions, they work better in a social context. And social isolation by itself is one of those risk factors for getting dementia.”

Addressing risk factors may push out the age at which people develop dementia and may, in some cases, stop the cycle that leads to dementia altogether.

“Because although we talk about Alzheimer’s disease in terms of amyloid and tau proteins in the brain, there’s another part of all that process, which is around inflammation and neuro inflammation. And so you can imagine, there might be a number of ways where inflammation is reduced, for example, it might be related to reduction of stress, it might come from reducing social isolation and improving or reducing depression.

“So there might be cases where it’s not just pushing it out, but maybe it’s intervening in that whole cascade of events.”

If the onset of dementia could be delayed by five years then by 2050 the prevalence of the disease would be lowered by 50%, she says.

She says there is also evidence that the things that can be done to reduce risk also appear to make a difference, in some cases, to the speed of progression of dementia.

“It’s not all over when dementia arrives, which is how it feels at the moment,” she says.

Keith Snell: “Where I slip a bit is names.”

Keith Snell is a friendly soul, a one-time sailor who built his own boats and then turned to miniature boats, sailing them with others at Hamilton Lake.

He is happy to talk about his Alzheimer’s, though it’s hard for him to hold the thread for long. “Where I slip a bit is names,” he says. “I know the people.”

Keith likes doing the dishes and vacuuming, which Merle says has been a big help to her. “But sometimes I’ll open the fridge and the clean pot will be in the fridge, because he’ll have forgotten where it goes. Everything in the kitchen, it’s like a treasure hunt.”

She has been to support groups where she’s found she’s far from the worst off. “Keith doesn’t harm me, he’s loving. He just gets annoyed with the fact that he can’t drive or sail his boats,” she says.

He will get the washing in if she asks, and helps her make the bed. He goes to a daycare programme four days a week. So far, he hasn’t got lost when out on a walk, and a grandson has put a tracker in his shoe.

But Merle is watching her husband of 62 years decline, and wondering what will happen in the end.

Dementia Waikato can be contacted on 07 929 4042.

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