University of Otago psychology and marketing researcher Prof Kirsten Robertson said carers carried a significant burden, but the health system tended to focus on the person with dementia.
So her latest research has focused on carers, and now her findings are being put into practice by Alzheimer’s Otago.
Prof Robertson said almost 70,000 people lived with dementia in New Zealand at present, and that was projected to reach 170,000 by 2050.
‘‘Most dementia care is provided by family members — sometimes described as the ‘invisible second patients’ — and without support, carers experience poorer physical and mental health and lower quality of life.
‘‘When carers are well supported, people with dementia are more likely to stay at home longer and have a better quality of life.
‘‘Supporting carers isn’t just the right thing to do, it’s essential for a functioning healthcare system.’’
Prof Robertson said she had cared for a person with dementia, and it was an ‘‘incredibly complex’’ role.
‘‘For me, the hardest part was the loneliness — that sense that others don’t fully understand the anticipatory grief, or don’t know what to say
... so often, they say nothing at all.
‘‘There can be moments of closeness and connection, but alongside that, there is ongoing emotional strain.
‘‘Carers experience grief, not just at the end, but throughout the journey as they see the person they love change over time.’’
After interviewing a wide range of caregivers, she built up a detailed picture of the practical intensity of dementia care, and some key things stood out.
She found loneliness had a strong impact on the wellbeing of carers, and connections mattered —
‘‘feeling understood and emotionally supported is critical,’’ Prof Robertson said.
She also found carers often avoided asking for help, so support services for carers needed to reach out, rather than wait to be asked.
‘‘Many carers don’t seek help, not because they don’t need it, but because of stigma, not wanting to burden others, or simply not knowing where to go.’’
Trusted relationships were also important, and having a consistent, empathetic support person made ‘‘a big difference’’ to the wellbeing of carers.
Every caregiving situation was different, and there was no ‘‘one-size-fits-all’’ support service, so support needed to be tailored and flexible to each individual.
Many carers did not know where to go to, or to find support early enough, so clearer pathways needed to be highlighted as well, she said.
‘‘Overall, it’s not just about services existing, it’s about how accessible, relational and responsive they are.’’
Most of her research findings have been picked up by Alzheimer’s Otago, and she said it was ‘‘really encouraging’’ to see her research come together with dementia care practice.
