“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 is 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 found that dementia’s the disease we most fear being diagnosed with 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 NZ 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 NZ economy, with a cost to the economy of over $NZ1billion, predicted to rise to nearly $NZ3 billion as numbers triple by 2050.

But the NZ health and social care system is woefully underprepared to support people with dementia and their families. We can’t just do what we’ve always done. 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 need to completely re-think our approach.

Most people with dementia live at home for years, progressively engaging with a wide 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 for people in the community.

Funding and services need to support people to have a good life with dementia. People with dementia battle with symptoms of profound and progressive behaviour change, yet always, 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. Families struggle.

Essentially, we need clinical and social care in community based services that support people to live a good life while they’re at home, and quality residential care appropriate for their needs when their dementia is too advanced for them to live at home.  At the moment, we don’t have either.  Currently community based services are not appropriately funded or designed to meet the real needs of people living with dementia, while there are not enough well designed and sufficiently staffed quality residential care options for people when they need it.

Changes are needed fast, as the ageing population has forced urgency on us. This urgency means 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 from all over the country who work in the dementia sector had a very clear, shared view of the changes needed.  New Zealand needs a national plan and consistent model for dementia care. We need to raise awareness of how people with dementia can live well, and provide services in the community 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 to develop an appropriately trained dementia workforce, taking a multidisciplinary team approach, including doctors, nurses, allied health, health navigators and trained support workers to help families manage the condition, and improve the integration and coordination of the network of services that people use over their dementia journey.

Lastly, we, as a society, need to recognise that people with dementia are still the same people they always were, with the same needs we all have for friends, family, love, laughter and things we love doing. They are facing significant challenges in their daily lives but with our help they 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.

About the author

Shereen has been NZDC Executive Director since 2014. She holds Bachelor and Masters degrees, and has spent 20 years in leadership and management roles in the public and private sectors.