8 questions that families and carers can ask aged care providers
If you are caring for someone living with dementia, there may come a time when you don't feel able to support them in the community/in their own home. Making the decision to explore residential care options can be incredibly difficult, both for you and for the person you are supporting.
In this article, we look at the aged care process from the perspective of carers who have had to make the difficult call on behalf of their spouses, who live with dementia and were no longer able to be part of the decision-making.
It is worth noting that having a conversation early on with the person you are caring for can be important in better understanding their wishes and preferences, should the time come. Some people look at local services while they are still able to do so, while others may talk to their families about their preferred location or style of residence. Don't assume a person living with dementia can't offer an informed, considered opinion and understand that a change of living arrangements can be hard for everyone.
For support for your individual circumstances, please call us on 1800 100 500.
Whatever your situation, being prepared and having the information you need to make an informed decision can make the process less stressful. So, what should carers ask aged care providers?
We asked Dementia Australia Dementia Advocates Vern Marshall and Heather Fitzpatrick for a list of questions that can help you start the process of gathering information.
Heather shared her experiences after her husband Noel moved into care and Vern reflected on his time as co-carer for his late wife Rosemary who lived in residential care for two years.
Vern and Heather shared that finding care was an often emotional and overwhelming experience but ultimately a decision they made to maintain their own health and wellbeing and ensure their partners received appropriate care.
The questions below are in no particular order of priority. The questions you ask may be slightly different to another person so please call us on 1800 100 500 if you would like to discuss your specific circumstances.
1. Is there availability? How does the waiting list work for urgent situations?
Vern: There was quite a sense of urgency and we couldn’t wait, so I had to find out if there was availability almost immediately.
Heather: I knew that Noel would eventually have to go into care before issues really progressed, so I knew that in the next 12 months I’d need to find somewhere that was available for him.
2. What level of dementia care education do you require of staff? How often do staff do dementia specific training and skills professional development?
It’s important to note there is no compulsory dementia specific training for aged care staff so you should ask as many questions as you can to gauge the level of knowledge of staff. Also, you can suggest the provider or staff contact Dementia Australia at any time for education or support.
Vern: A dementia diagnosis can be very different to any number of other reasons why other people are living in aged care. Do staff have the experiences and knowledge of dementia to deal with the dementia symptoms and changes?
Heather: I presumed if you work in a dementia area, staff will have specific training which I later found wasn’t always the case.
3. What is the day-to-day like, particularly lifestyle activities and food options?
Also, what happens when activities are not scheduled? How are dietary requirements accommodated?
Vern: The activities were a time that really lifted Rosemary so while she couldn’t speak or was unsteady on her feet, it was so important she was still offered plenty of engaging lifestyle opportunities.
Heather: Food was a big thing for me. My husband was losing so many other enjoyments but still really loved his food so cooking onsite, freshness and variety in food was a priority.
4. How is the residential care home structured? Should we seek a dementia-specific unit?
Residential aged care can provide varying levels of care and some have dementia-specific units designed specifically for people with dementia.
Vern: I really liked that more integrated approach and thought it would be an excellent environment for Rosemary because she had always been a social person. She liked to observe others and be amongst other people.
Heather: Noel had started to get disoriented. If he wasn’t in a dementia specific room, it wouldn’t make me feel that he’d be as safe as I would like.
5. How does it feel? Is it somewhere that feels home-like and comfortable?
Remember that first impressions count. Rely upon your intuition and common sense.
Vern: You have to remember you know your family member best so it’s the feel and ambiance and then imagining if this could be home for them.
Heather: You’re looking for hard and fast answers trying to make this big decision but sometimes the decision comes down to how it feels. You know your loved one, their likes and dislikes, and you can sort of tell if they would be happy here or not.
6. Can we communicate easily with staff and management? How will management keep us regularly informed and updated?
Vern: I wouldn’t have been happy with Rosemary being in a place where I didn’t feel I could go and talk to staff or management about anything.
Heather: I checked a few off the list straight away because I didn’t feel I was getting the full attention of the person I was speaking to and if I couldn’t speak to them now, what would it be like later on?
7. How might care change over time? How will you support us through palliative care?
People with dementia differ in the rate with which their abilities change but because dementia is a progressive condition, abilities will change over time.
Vern: Rosemary needed higher and higher care, and not all facilities were equipped to deal with the higher needs. I needed to see that the care was responsive and compassionate at each stage.
Heather: No two days are the same and you never really know what will come with someone who has dementia. Care providers need that understanding that things will change or progress overtime.
8. Is this a good option for us?
You need to judge the situation for yourself and feel comfortable with whichever decision you make. It will be different for each person and depend on what is important for you.
Vern: Closeness and location was an immediate consideration. Somewhere that I could get to easily so I could visit regularly and feel like I was still very much involved and co-care for Rosemary.
Heather: Noel loved being outdoors, getting fresh air and walking and I wanted to be able to go for walks with him in a secure environment. I saw some brand new, beautiful aged care facilities but some didn’t have a lot of outdoor areas, so it wasn’t somewhere I’d like to go.
This list is intended to provide a starting point as you consider residential care options. You should expect to add to this list with your own questions, which may also change as care needs change. You can also check out our Helpsheet on choosing a residential aged care home.
No one should have to face dementia alone. That’s why Dementia Australia is here. We empower people living with dementia, their families and carers to understand dementia and manage their diagnosis on their terms. Call us on 1800 100 500, 24 hours a day, seven days a week, 365 days a year or visit dementia.org.au.
Want to read more stories like this one? Subscribe to Dementia Australia’s eNews.
