The number of South Islanders living with dementia is rapidly increasing. What was a predicted wave whose leading edge lapped our feet in 2009 is now a wall of water bearing down on us. Most people reading this will have personal experience of someone in their own family circle with a dementia illness.
We do not know how many people living on the Mainland have a dementia. The best figures are projections based on overseas studies. We do know the numbers are increasing rapidly because we are living longer (a long-term trend) and because the baby-boomers are ageing (a medium-term trend). Seeing this trend on a graph is sobering.
In 2009, the South Island DHBs agreed to use a small dementia-specific regional fund to support service improvements for people affected by dementia. The South Island Dementia Initiative was born, as well as a person-centred care education programme for the dementia workforce called “Walking in Another’s Shoes”. When the South Island Health of Older Persons Service Level Alliance (HOPSLA) was set up in 2011 it was natural for these efforts to move under its umbrella. Almost 10 years later, it is a good moment to ask: Where are we now?
We should start by remembering where we were. In 2009, many people living with dementia had never been diagnosed. This meant they were deprived of the chance to understand what was happening and to take steps to improve their situation, and they couldn’t plan ahead. Diagnosed or not, most people did not receive dementia-specific services. There was no such thing as ‘dementia prevention’. GPs did not feel confident to make the diagnosis and some believed there was no point anyway. Most care that was available was heavily medicalised or disability-focused.
In 2009, people with dementia regularly moved through our public hospitals with no diagnosis and no management plan, yet worsening symptoms. Family were often left unsupported until people were no longer able to live at home. Dementia probably underpinned many admissions to the Emergency Department for older people, much of the demand for home support services for older people, and much of the need for people to enter aged residential care.
The level of unmet dementia need was higher for rural South Islanders, young onset people, people with long-term psychiatric or neurological illness, people living with intellectual disability, Māori, Pasifika, and Southeast Asian people, and for refugees. The stigma surrounding dementia was huge. There was no leadership.
What’s changed? Well, services in the South Island have improved, however unevenly and usually on the smell of an oily rag. The South Island has agreed on a shared model of care for dementia (Dementia is Everybody’s Business). Dementia is being diagnosed more often in primary care and general practice teams are supported to make those diagnoses. Cross-sector engagement has improved and grassroots commitment to improve things has certainly grown. But sadly, seen in light of the pre-existing unmet need and population growth, the main net change is that we are in a significantly worse position than we were in 2009.
We need leadership and we need change. This year, HOPSLA asked me to visit the South Island DHBs, delivering this call to action alongside a leadership document called Dementia is Everybody’s Business. The people I spoke to are committed and they are motivated, but real, lasting change is impossible if we all work alone. It is important that you too express the same urgent call to action to your leaders. After all, people living with dementia and their family, whānau and friends are not always so able to do this for themselves, and we can hardly say we didn’t see this coming.
This editorial has been republished with kind permission of the South Island Alliance. The original can be found here.