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Research highlights the harsh realities of dementia care

Author: Rob Gill
07 August 2015
  • Dr Siobhan O'Dwyer's research into dementia care opened up a largely taboo issue

A research survey that began by looking into the wellbeing of family carers of people with dementia has emerged as the catalyst for a far more complex investigation, which in turn highlights an issue broader than dementia care alone.

Griffith University’s Menzies Health Institute researcher Dr Siobhan O’Dwyer had been exploring a number of factors affecting carers of people with dementia. These included suicide risk, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.

Dr O’Dwyer and her colleagues surveyed nearly 600 family carers for her research with the Institute’s Centre for Health Practice Innovation. The study revealed that one in six carers had seriously contemplated suicide in the previous 12 months, with one-third of those likely to attempt suicide in the future.

A note from one carer – about the possibility of contemplating homicide – prompted a further study with interviews of 21 family carers of people with dementia. Dr O’Dwyer said this follow-up study revealed some carers actively contemplated killing the person they were caring for, while others had ‘passive death wishes’, hoping that the person might die in their sleep.

“Although we do need more research, the findings highlight just how challenging it can be to care for someone with dementia.”

Dr O’Dwyer said research is also needed to see whether people caring for family members with other illnesses or disabilities experience thoughts of suicide and homicide.

”There is much that can be done to support carers. Everyone has a part to play – families, GPs, service providers, and policy makers – and we need to start now.”

Carers Australia CEO Ara Cresswell said the report’s authors were at pains to point out the number of carers who say they need support and services.

“This is an issue that Carers Australia constantly stresses.

“In addressing such a taboo, the research could be of comfort to many carers,” Ms Cresswell said.

“Opening up the discussion may allay the concerns of carers who feel guilt over such thoughts, and help them cope with caring for someone with dementia.”

ehospice has published a number of articles on carer respite in recent months and welcomes reader feedback and their own experiences in this important area. Carers who need support are encouraged to call Lifeline on 13 11 14, The Suicide Call Back Service on 1300 659 467, or the Carers Advisory Service on 1800 242 636.

See more articles in Research

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