A discussion paper released today by Alzheimer’s Australia NSW as part of Carers Week outlines the impact of moving into residential care for people with dementia, their families and carers.
“Many tell us that even if they find a great facility for their loved one, the decision to make the move and then the days leading up to the change are some of the most difficult days of their lives,” said the CEO of Alzheimer’s Australia NSW, John Watkins.
“One carer told us that moving his mother into care and taking her away from her home and her cats was the most traumatic and saddest event he had ever had to cope with in his life, while another said coping with the change after 63 years of marriage had not been easy.
More than half the people in residential aged care facilities have dementia, which affects almost 300,000 Australians and 100,000 people in NSW.
“But what we also found is that when it is managed the right way, it can be much smoother and a much less stressful experience than expected and can help alleviate some of that grief and guilt that is so often associated with this time.”
Mr Watkins said the report, entitled The Most Difficult Decision: Dementia and the Move into Residential Aged Care, also showed that those who have had a good experience said it was because of good communication with staff and because there had been time to plan for the transition from their own home to residential care.
“Often, the person had stayed in the facility beforehand for respite care,” Mr Watkins said.
The discussion paper contains several recommendations to help make the transition easier, including that the Australian Government fund a network of key workers to support the carer and person with dementia and that standardised application and information forms are developed.
Recommendations also include that service providers enable staff to work with the person with dementia and their carer in their care planning, decision-making and service delivery and that the State Government works with Local Health Districts to develop service pathways for the person with dementia and their carer to plan for a future that may include residential care.
“While many people with dementia and their families and carers would like to stay in their own home for as long as possible, there comes a time for a lot of people when there is a need for the sort of care that residential aged care facilities provide,” Mr Watkins said.
The report also found that almost half of people with dementia in residential aged care have been moved in directly from hospital following a crisis, adding to the confusion, stress and grief felt during this time.
“We would also recommend that discharge planning policy be changed for a person with dementia to provide two days’ notice, as a minimum, to allow the person with dementia, their family and residential aged care facility staff to provide better support in the transition into residential care,” Mr Watkins said.
National Dementia Helpline: 1800 100 500 (an interpreter service is available)