Struggle for respite care

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The exhausted wife of a Dunedin man with vascular dementia is having to travel as far away as Balclutha to find respite care.

Susan Millar (71) has been primary caregiver for her husband David (80) for more than a decade.

In that time she has had three trips to an emergency department with symptoms of exhaustion – twice in Sydney and once in Dunedin.

The couple, who had lived in Sydney, moved to Dunedin three and a-half years ago in search of Mr Millar’s roots and a calmer, quieter life.

But day-to-day living with the physical and emotional effects of dementia has been tough.

“Caring for someone with dementia is hard work, isolating, and exhausting,” Mrs Millar said.

The Millars have been allocated funding for 90 days of respite care per year.

But Mrs Millar has found it almost impossible to find secure respite care for her husband in Dunedin, instead having to take him as far afield as Balclutha.

“What it has meant is that although I have the funding for respite care, I really haven’t been able to access it as often as I should.”

Mrs Millar said she regularly accessed the Eldernet website, www.eldernet.co.nz, where available respite beds were supposed to be listed.

“It is very frustrating to have to deal with at a time when life is difficult enough,” she said.

Southern District Health Board health of older people manager Sharon Adler said historically the SDHB had paid for respite beds to be held available 365 days a year, but that had changed to a demand-driven service.

The situation of individual people with dementia and their carers was assessed using the interRai clinical needs assessment tool, and funding allocated accordingly, she said.

Some aged-care facilities within the DHB area held respite beds aside, but the decision was theirs, Ms Adler said.

Eldernet website’s list of available respite beds was updated every day and, when Ms Adler accessed it on Tuesday, showed a handful were available, but none within the Dunedin metropolitan area.

In 2016-17, 63 individuals accessed dementia respite for a total of 1337 days, at a cost of $203,000, Ms Adler said.

“So we can see that people are using the service,” she said.

Mrs Millar felt the lack of respite beds in Dunedin contravened the Ministry of Health’s stated aim of providing the “right services, in the right place, at the right time”.

She was speaking out on behalf of many other carers in the city who faced similar difficulties.

“A lot of carers are soldiering on at home, despite the fact that many are elderly and have health problems themselves.

“They don’t have the energy to fight the system and are fearful of speaking up.”