"On my good days, I can almost pass for a normal person. On my bad days, I feel like I can't find myself ... I don't know who I am and what I am going to lose next," says Alice Howland in the film Still Alice (2014).
Howland plays a professor of linguistics in her mid-50s, trying to explain to her daughter what it feels like to have dementia.
New research on Kiwi attitudes to dementia shows it's the disease we fear most after cancer. It doesn't have to be this way. Our health and social care system could support people to live well with dementia, if it changed radically.
The number of people with dementia in New Zealand is rising rapidly because of the ageing population and the increase in people with common conditions that carry a higher risk of dementia, such as diabetes, obesity, drug and alcohol issues and intellectual disabilities such as Down syndrome. There is already a significant impact on the economy with a cost of $1 billion-plus, predicted to rise to nearly $3b as numbers triple by 2050.
But the health and social care system is woefully underprepared to support people with dementia and their families. We can't just do what we always have.
People living with dementia have a long-term degenerative brain disease that causes medical, behavioural and social issues. Our systems are not designed to respond to their needs. We must rethink our approach.
Most people with dementia live at home for years, progressively engaging with a range of services for increasing support. Their families are often confused and distressed about where to turn next.
They need help to navigate a complex health system that has traditionally focused on acute care in hospitals rather than long-term care in the community.
Funding and services need to support people to have a good life with dementia. They battle with symptoms of profound and progressive behaviour change, yet, with support, have the potential to be active members of the community — working, volunteering, attending events and socialising. However, current community care is insufficient, inflexible and not designed to be fit for purpose.
Essentially, we need clinical and social care in community based services that support people to live a good life while at home, and quality residential care appropriate for their needs when their dementia is too advanced for them to live at home.
We have neither.
Community-based services are not appropriately funded or designed to meet these needs, while there are not enough well-designed and sufficiently staffed quality residential-care options when people need it.
Changes are needed fast, as the ageing population has forced urgency on us. We need to work together, sharing knowledge and collaborating to improve the way the system responds.
At the 2015 NZ Dementia Summit held by the NZ Dementia Cooperative, people who worked in the dementia sector had a very clear, shared view of the changes needed. New Zealand needs a national plan and consistent model.
We need to raise awareness of how people with dementia can live well, and provide services to support them to do this. Services should be flexible, and address their real psycho-social needs.
Our health and social care system should value family carers and provide them with adequate support, respite, and help to navigate the system.
We need an appropriately trained dementia workforce, taking a multidisciplinary team approach, including doctors, nurses, allied health, health navigators and trained support workers, and to improve the integration and co-ordination of the network of services.
Lastly, as a society, we need to recognise that those with dementia are the same people they always were, with the same needs we all have for friends, family, love, laughter and things we love doing.
They face significant challenges but with our help can manage the gaps that open up in their perception and connection to the world. We can all play our part in creating dementia-friendly environments.
• Shereen Moloney is executive director of the NZ Dementia Cooperative.