Living with dementia

Emma Davidson

“It really concerns me that we're developing an aged care system with the haves and have-nots. If you've got money, you can get a really good aged care facility to look after you. If you haven't got money, if you're on the pension, you're pretty well stuffed. And there's no other way to put it,” Ita Buttrose said in a National Press Club address on World Alzheimer's Day, 21 September 2016.

Almost every Australian knows someone who has had dementia. Right now, around 1.5 per cent of the Australian population are living with dementia. That's more than 353,000 people. This includes more than 25,000 people with younger onset dementia (under 65 years, some as young as 30 years). Within five years, that number will be more than 400,000, and by 2050 it could be almost 900,000 people.

Dementia is described by Alzheimer's Australia as “the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person's functioning. It is a broad term used to describe a loss of memory, intellect, rationality, social skills and physical functioning.”

You are not alone

Image by East Midtown, CC-BY-SA-2.0

Wednesday 21 September was World Alzheimer's Day — an opportunity to reflect on the progress made towards a cure, and to talk about how we can improve quality of life for those with dementia. The key message for 2016 was “You are not alone”. A Roy Morgan poll commissioned earlier this year by Alzheimer's Australia found that people with dementia are twice as likely as the general population not to see any friends regularly. Reducing social isolation and making it easier for people with dementia to participate in their community can result in better quality of life, and a longer period of time living in their own home before the need for residential aged care. Dementia-friendly communities are important to help people feel respected and included in the community in which they live.

Being able to participate in arts and cultural activities and community groups can make a difference to cognitive abilities, social connections, and general wellbeing and happiness for people with dementia. The Art and Dementia program at the National Gallery of Australia recognises the ability of discussion-based tours to provide intellectual stimulation and social inclusion, and is based on a pilot program evaluated by a clinical psychologist.

"A critical issue highlighted by this study is the ability of psychosocial programmes to maximise the residual capacities of people with dementia. That is, the excess disability observed external to the programme was not an issue within the group context. This, in turn, reinforces the importance of providing interventions that promote 'normal' higher level activities for people with dementia," writes Dr Mike Bird in his report on the pilot program.

Age friendly is people friendly

Making sure that our communities are inclusive of older people, including people with dementia, means it is easier for our older citizens to continue with their everyday activities as independently as possible. "Age-friendly is really just 'people friendly'. Design that is good for older and younger people is good for everyone," says ACT Greens seniors spokesperson Caroline Le Couteur.

Cities that are designed to be age-friendly are safe, slower speed environments that encourage walking, cycling, and outdoor activity. Physical exercise can help in reducing the onset of dementia, and a walkable neighbourhood makes it easier for older people to participate in their local community. This is a key part of the ACT Greens' age-friendly cities initiative.

Caring for the carers is also an important factor in improving quality of life for people with dementia, as well as the wider community affected by the disease. A large proportion of the unpaid carers in Australia are over 65 years of age (over 580,000 in 2012), and 93 per cent are providing care for their partner, parent, child, or sibling. Ensuring that the carers are also looked after, with counselling, respite care, and support services, means that both the carer and person being cared for are better able to continue living as independently as possible.

Better funding for aged care and palliative care

Once a person has reached the stage where residential aged care or palliative care is needed, it is important that they are able to access quality care that is sympathetic to their needs. The Greens announced plans for increased funding of $137m in funding and support for dementia, and an additional $76m for palliative care during the 2016 Federal Election campaign. The announcements demonstrated their commitment to serving the needs of the community in relation to dementia and aged care.

“We know dementia is on the increase and palliative care is often under-resourced. This is why the Greens have committed to extra funding in those areas,” said Senator Rachel Siewert.

“We will continue to work with groups across the sector on these major reforms, including a particular focus on the Aged Care Sector Committee's Aged Care Roadmap to ensure we have a quality aged care system”.

“If you're on the pension, you're pretty well stuffed.”

In a National Press Club address on 21 September, Alzheimer's Australia President Ita Buttrose highlighted the impact of inequality on the health of older people with dementia. “It really concerns me that we're developing an aged care system with the haves and have-nots. If you've got money, you can get a really good aged care facility to look after you. If you haven't got money, if you're on the pension, you're pretty well stuffed. And there's no other way to put it,” she said.

A significant number of the questions at the National Press Club address focused on end-of-life choices for people with dementia. Dr Ron Petersen and Ita Buttrose both recommended early discussions between the person with dementia and their family about advance care directives. Writing down their wishes and talking about plans early means that difficult decisions in the late stages of the disease can be taken with the focus on the wishes of the person.

“It goes back to, in the beginning, deciding what sort of care you want, what your wishes are, and the people who know the person with dementia need to encourage them to do that when they are able to make decisions that are going to be very important to them in the long term,” Ita Buttrose said.

“Doing nothing can not be a strategic option”

Dr Ron Petersen, Director of the US Mayo Clinic Alzheimer's Disease Research Center and the Mayo Clinic Study on Aging, and a member of the World Dementia Council, spoke about the urgent need for research funding at the National Press Club on 21 September.

“It's never a convenient time to increase funding… I don't think we can afford that… I think it's time for a national strategy, a national plan, to be put into action. Because there's no more important resource than the people, and we have to invest in our fellow citizens.”

Ita Buttrose quoted one of David Cameron's ministers in 2013: “Doing nothing can not be a strategic option.”

With a large — and rapidly increasing — percentage of the global population affected by dementia, including those who are carers for people with dementia, it is important that we take action now. This includes working towards prevention or cure of the disease, as well as improving the quality of life for those living with dementia.

Header image by Moyan Brenn, CC-BY-2.0