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We spoke to people living with dementia to find out what they think about residential aged care and the possibility of needing it for themselves.
Bobby describes herself as a planner and has researched aged care options in her area for herself.
“I currently live at home, alone, and have a level 2 Home Care Package under My Aged Care. At this stage I am still very independent and can still manage my own self-care but do need support with some home care and transportation. I have a lovely care worker, who is flexible around my needs and availability, but I think I am very lucky as most people I know have a whole range of different workers who change on a regular basis and are not flexible around their needs. I think it gets harder as our needs increase. I can’t say that my worker knows a great deal about dementia, but she is kind, open and ready to learn, so she is learning as she goes along. This lack of training, is not how it should be, of course and would not be practical if I was at a later stage of dementia,” Bobby said.
“Although I hope to remain at home for as long as I can, and do a lot of research into technology and aids that will keep me at home, because I am alone without the possibility of a family care I know that there will be a time when I will need to move into residential care. This is not a prospect to which I look forward.
“Luckily, I have always been a planner, because I am alone it is vital that I plan ahead for the time that I am no longer able to think clearly. I have now visited 5 different residential care services to assess them and their services. I have also been given the option to use “respite services” to “try before I buy” as my ACAT assessor described it - this was given to me two years ago when they decided that I was at too great a risk to continue to stay home alone, and would need to go into residential care within 12 months. I have since researched, identified and fitted various technological monitoring and assistance tools to aid me to manage the risks in the home, as I am certainly not ready or in need of moving into care. I have not used the respite opportunity as yet, as it is still quite a costly thing to do, and not at all like a holiday.
“Although visiting is never the same as living in a setting, it has certainly allowed me to identify the vast variations between the environmental and care settings of different care settings. They would all tell you that their staff have extensive training in working with people with dementia, but my observation is that the capacity and knowledge of staff is highly variable, with a lot hanging on the personalities of the staff as well as their training. There is also a great deal of variability in the environmental settings. Some have put a great deal of time in establishing a homely but comfortable setting for people in their higher care dementia units and it would seem that this is not purely based on the cost involved in buying into these places, but more of the attitude and approach of Boards and Executives of the organisations. Two of the settings that I visited do not separate their dementia residents from others. These were both newer settings and it would be great if this was the future for residential aged care. There are always going to be some residents who will need some additional support to keep them and others safe, but if these newer settings find that it is workable for some of us maybe this will be the future for more of us.”
For Theresa, the thought of residential aged care is a concerning one.
“The only thing that really slows the progression that I’ve seen in my experience is connection with people, and when you’re moved out of your home, you’re just disconnected. It’s like unplugging your toaster,” Theresa said.
“There are many, many times when staying at home is not possible, but aged care will and does have a massive impact on your disease trajectory.”
Cameron (pictured above with his wife and grandchildren) said it is difficult to know what his needs will be in the future and how his disease will progress.
“It’s difficult to get people living with younger onset dementia into residential care, especially if you have behavioural issues,” Cameron said.
“I don’t yet have behavioural issues, but it doesn’t mean that I won’t one day.
“When the time comes, I guess I won’t know much about it, but it does concern me that it will be a burden for my wife.”
Jenni said that her experience with support workers has been varied and their understanding of dementia has been patchy. She worries that the same lack of understanding may occur in residential aged care.
“I currently have a support worker each day and I am able to attend to my daily activities through this support. I have had varied experiences with support workers. I have had wonderful workers who are knowledgeable, caring and respectful. I have also had dishonest workers, ethically unaware workers, workers who know nothing about dementia and the situations that I might face on a day-to-day basis and workers who don't understand their role or their boundaries,” Jenni said.
“There have also been periods of frequent turnaround. This is unsettling and disabling, the thought that someone can just step into a person's life and fill in for a day here or there doesn't work for a person with dementia.
“Workers need to have not only specific knowledge and understanding of dementia and how it may affect the person on a day-to-day basis but also the physical issues that may accompany this neurodegenerative disease.
“Aged care workers and support workers come into the field with very varied levels of education and experience and often with little knowledge of dementia. This is extremely disappointing as the people that they are caring for are the most vulnerable in our communities.
“I visited a dementia unit in a residential aged care facility recently and although the staff were friendly towards me as a visitor, I noted a distinct disinterest to leave the confines of the nursing station to attend to people in the community lounge room, some of whom were quite distressed.
“People with dementia all have a story, a background, a history. They still deserve a place in our families and our community they do deserve respect and to have capable informed people caring for them.”
If you are considering aged care for yourself or a loved one, we are here to help. Call us on 1800 100 500, 24 hours a day, seven days a week 365 days a year.
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