Two in three people and 62% of healthcare practitioners consider dementia is a normal part of ageing, according to a large worldwide study.
The World Alzheimer Report 2019: attitudes to dementia recently released by Alzheimer’s Disease International found that more than 50% of healthcare practitioners surveyed agreed that their own colleagues ignored people living with dementia; and 33% of people thought that if they had dementia they would not be listened to by health professionals.
Almost 70,000 respondents from across 155 countries completed the worldwide survey.
“There is a massive gap between what we know from scientific research and the attitudes that the general public hold about dementia. It [dementia] is not a part of normal ageing, there is a lot that can be done to prevent dementia but the survey results show that the message is not getting out in many parts of the world,” said Flinders University College of Nursing and Health Sciences PhD candidate Jessica Young.
Ms Young, co-authored the opening chapter of the global report, which provides an introduction to the concepts of ‘stigma’, ‘stereotype’, ‘prejudice’ and ‘discrimination’.
Ms Young’s contribution to the report relates closely to her PhD research on the involvement of people with dementia in care decision-making, published in journal Dementia.
“What we have done is a systematic review of the accounts of persons with dementia who experience transition to long-term care. The common assumption is that persons with dementia are not able to be involved, and that family members are solely responsible for making care decisions.
“Transition to an aged care facility is often quite traumatic and can happen quite quickly in response to a critical health event such as sudden deterioration or a fall.”
The research which started in 2016 and is ongoing until next year, made some preliminary recommendations.
“It’s about negotiations throughout the trajectory of transition to care for persons with dementia – trying to have those conversations and support persons with dementia to be involved as much as possible, in the face of cognitive and linguistic changes.”
The first recommendation to come from the review is to support persons with dementia within their own unique context, Ms Young said.
“Changes in diagnostic technologies means people are being diagnosed earlier and there is a much broader spectrum of what it looks like to have ‘dementia’. We are still holding on to the view of the bedridden person with dementia in the more severe stages.
“Input should be sought from persons with dementia about transition to care, and they should be supported in shared decision-making.
“If we reframe our thinking and involve persons with dementia in their care it allows their voices to be heard and takes away some of the responsibility from family members, who often experience guilt and shame as a result of deciding to move a loved-one to care.
Other recommendations included to maintain social contact with family and friends throughout the transition to care; and to actively support persons with dementia to socially integrate into the new setting.
“Persons with dementia really need to stay well connected with their family members through these stages in transition to care. They are often settled into their room and oriented to the day-to-day happenings of the facility but this is not necessarily extended to meeting and connecting with co-residents. They need support to make new connections; family members can assist with this.”
Contribution to the World Alzheimer Report was a valuable opportunity to continue to advocate for full and equitable engagement of persons with dementia in our communities, Ms Young said.
“It is encouraging to me to see how my local research contributes to a broader, global discussion about how people with dementia experience the world, and how we as a community might best support them.”
The report can be accessed at: www.alz.co.uk/research/world-report-2019