Prof Henry Brodaty advocates the importance of the new paper from Alzheimer’s Australia NSW
By Natasha Egan
A person with dementia is often left disorientated and disempowered after moving into residential care while their carer typically experiences the most difficult day of their life with feelings of grief, guilt, loss and relief, according to a new discussion paper from Alzheimer’s Australia NSW.
The Most Difficult Decision: Dementia and the Move into Residential Aged Care was launched yesterday at Parliament House, Sydney, and coincided with a celebration of the organisation’s 30th anniversary.
The paper further found that almost half the numbers of people with dementia entered a residential facility directly from hospital, which decreased choice, rushed the decision making process and further magnified emotions.
Alzheimer’s Australia NSW CEO John Watkins said is not surprising that carers feel guilt and pain but the increasing number of people being discharged from hospital and straight into residential care is.
“That, we understand, is because people are being cared for longer and longer at home until the dementia gets worse and then it’s that critical trigger point,” Mr Watkins told Australian Ageing Agenda.
“Something happens that affects that finally balanced structure and then there’s a desperate decision very quickly made,” he said.
Due to improving capacity in homecare, this situation is expected to grow, the study found.
As a result, the paper recommends better planning and information from health departments and a hospital discharge policy that provides a minimum of two days’ notice to assist the person with dementia, their carer and the residential facility with the transition.
More about the study
The project was co-funded by UnitingCare Ageing and Baptist Community Services NSW & ACT (BCS).The findings are based on a survey of over 250 carers who experienced moving a person with dementia into full-time care with either of the providers.
NSW Minister for Ageing Andrew Constance, parliamentary Friends of Dementia group co-conveners Labor MP Andrew McDonald and Nationals MP Leslie Williams along with other parliamentarians, carers and dementia advocates were present for the paper’s launch.
Alzheimer’s Australia estimates 280,000 people are living with dementia in Australia with just over half of all aged care residents diagnosed as having the disease.
There are 1600 new dementia cases a week, Mr Watkins said. And by 2050 it is estimated there will be 7400 people diagnosed with dementia a week.
Elsewhere among the 14 recommendations for government and service providers is a network of key workers to assist people with dementia and their carers, improved access to counselling services and information and better communication.
Even people who aren’t faced with an emergency transition into a residential setting are overwhelmed by the technicality of the process such as filling out forms and seeking advice, said Mr Watkins.
“It’s about smoothing that way for them. And that requires counselling, communication, accessibility to information about residential facilities and so much more.”
Carer Marlena Colebourn told the audience that the day she put her husband Ken, who has dementia, into residential care was the hardest day of her life.
“I was so overwhelmed by guilt,” she said.
Mrs Colebourn said she supports the recommendations in the discussion paper and called on governments to act.
“We must increase awareness and lobby governments for assistance as this disease is in epidemic proportions and something has to be done,” she said.
The role of providers
Recommendations for service providers include developing communication standards that recognise the value of all stakeholders, a person-centred approach throughout the transition process in acknowledgement of the emotional impact plus provision of education for staff and carers.
Kincare portfolios manager of health and ageing, Wendy Hill, was at the launch. She said the homecare provider already provided information about clients moving into full time care but could do a little bit more.
“[The paper] has already given me some ideas on how we can improve the transition from community care into the residential setting so we can formalise the process,” Ms Hill told AAA.
BCS CEO, Ross Law, said a move into residential care should be viewed as an opportunity to support the carer’s ongoing role and relationship.
“In response to the study’s findings, BCS will be taking action in a number of areas to target additional services, particularly in regard to connecting carers with support from both professional and peer counselling and support services,” Mr Low said.
Steve Teulan, Director of UnitingCare Ageing, said the findings provide an insight into the emotions and anxiety carers face.
“UnitingCare Ageing will be continuing to work with Alzheimer’s Australia to improve our care and support of carers through an innovative education program and support groups,” Mr Teulan said.
Link to a pdf of the discussion paper: The Most Difficult Decision: Dementia and the Move into Residential Aged Care
