Nov 29, 2018

Caring for people living with young onset dementia


How can we take into account the different needs of young people who are living with dementia? And how do we provide the most appropriate care for them? At present, there are very limited resources available for those living with young onset dementia.

That is the question that Marleina Fahey, Dementia Consultant, Baptistcare, set out to answer in her presentation at the Akolade Future of Australian Aged Care Conference held in Sydney this week.

Ms Fahey said caring for a person living with young onset dementia can be emotionally and physically draining, and also costly.

There are 26,000 Australians living with young onset dementia at present, with Alzheimer’s being the most common cause. Young onset dementia is defined as dementia that is diagnosed in someone who is 65 years or younger.

Difficulties with diagnosis

Because young onset dementia usually has atypical presentations, it can be very difficult to diagnose, Ms Fahey said. Even among the medical profession, because it is so uncommon to see dementia in a young person there can be delays in diagnosis.

Ms Fahey said vision and language problems can be some of the  first symptoms, followed by difficulties planning, making decisions, and with behaviour, such as irritability and disinhibition.

Diagnosis often comes as a relief not only have a way forward, but also to have an explanation for the problems people have been experiencing.

Ms Fahey gave several examples of the trying circumstances families found themselves in before they could obtain a diagnosis. One wife was horrified when she and her husband played golf together, and the husband masturbated on the golfl course.

One husband began calling sex workers. When his wife found out and blocked the calls, he attended a prostitute, but didn’t have money to pay, and the police were called – which finally led to a diagnosis of dementia.

Ms Fahey said young onset dementia can also be dangerous.

She said one person began to eat compulsively, eventually taking a bite out of of disinfectant bottle in a public toilet.

It can be very difficult for family to even raise the issue of how the person is behaving without triggering an “irate” response.

It’s not surprising that relationships often break down for people with young onset dementia.

“It’s very difficult for partners,” Ms Fahey said.

But she said she is amazed by how often a spouse will return once a diagnosis is made.

She told the story of one woman who said she wished the diagnosis had come sooner because her children had come to refer to their father as a “nasty man”.

“A lot of people with younger onset dementia are told they have depression, and are treated for depression, or they may have depression on top of dementia,” said Ms Fahey.

Others are told their symptoms are related to menopause, and to “ride it out”, which can diagnosis for years.

The different types of young onset dementia

There are several different types of young onset dementia, including:

  • Semantic dementia, which involves speech and usually evolves over years, and causes trouble understanding words.
  • Progressive aphasia dementia, which causes a loss of the language function.
  • Alcohol dementia affects 10-25 per cent of those with young onset dementia.
  • Dementia with lewy bodies.
  • Parkinson’s disease with dementia.

Young onset dementia is often accompanied by a number of motor skills problems, which can further complicate and confuse diagnosis.

The complexities of living with young onset dementia

A diagnosis of young onset dementia can often turn lives on their head, Ms Fahey said.

Often people diagnosed will have families to care for, and sometimes the carer may already be looking after children and ageing parents.

There are often also financial difficulties, such as being able to work, and meet commitments on mortgages or care loans.

People with young onset dementia may also lose the ability to drive, which can mean they are no longer able help with the usual juggle of family life taking people from place to place.

Losing the ability to drive can be “extremely difficult and challenging” said Ms Fahey.

Spouses say they often feel they are no longer a ‘partner’, but now a ‘carer’. One wife said to Ms Fahey, “I’m just stuck with him now”.

Often people with young onset dementia experience increased sex drive, which can lead to “challenges”.

Ms Fahey noted one case where a husband has asked for sex seven times before breakfast. His wife told him they had already had sex, a “creative and supportive” way to “live day to day” with his requests.

“To focus on living day by day seems to be an effective coping strategy”, Ms Fahey said.

“Where do these people fit? Who will care for them?”

Ms Fahey said that even once you have diagnosis, finding the right support and services can be extremely difficult, and often in fact those services just do not exist.

She recommended Dementia Australia’s young onset dementia key worker support program.

Even finding respite care can be difficult, and often carers have to coordinate between using a number of providers.

Ms Fahey said the Ella Centre younger onset dementia service is available, but other than there there are limited choices.

She said often the care of people with young onset dementia “comes down to the goodwill of aged care service providers to do their best, but they aren’t tailored to their needs of that person.”

For young people living with dementia in aged care facilities, they may be 20 or 30 years younger than other residents, and have vastly different interests, food tastes, abilities, and physical capabilities.

By the time families put their loved one with young onset dementia, Ms Fahey said they are often “at their wit’s end”. She said they have gone through the difficulties of obtaining a diagnosis, only to find the help and services they need are not available.

“As people working in this industry, we need to be able to get to these people, and we need to be supporting carers and listening to them speak on behalf of the person they know, and make sure at the very least people are comfortable,” Ms Fahey said.

Baptistcare’s residents with young onset dementia

Baptistcare has 17 aged care facilities, with 1800 residents. They have 64 residents who are aged 65 years and under.

Of the residents aged 65 years and under, the average age is 59.7 years, compared with an average of 85.1 years across the organisation.

“It’s not like it’s a horrible thing, you’re life’s over, to enter residential aged care, but i think it would certainly be nice if there were other options for young people,” Ms Fahey said.

She provided examples of people whose quality of life had improved once they were in the facility. One man had stopped drinking and was able to re-establish relationships with some of his family. “That wouldn’t have happened without services to help that man,” she said.

“The NDIS is a step in the right direction”, Ms Fahey said, “but we still have a very long way to go to support people to rebuild their lives, to connect relationships, be part of the community, and be included and valued.”

Please note: the image used to illustrate this article does not reflect actual people or events.

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