Aging and health professor Lee-Fay Low at the University of Sydney shares six things to consider when making the tough decision about long-term care for family members living with dementia.
Almost 400,000 Australians are living with dementia. A million or more family members and friends care for and support them. About two-thirds of people with dementia live in the community.
Deciding to move a loved one into a nursing home is an incredibly difficult one. I found it difficult and stressful considering this move for my own loved one, even with 20 years of experience in dementia and aged care. Sometimes the decision has to be made quickly, such as when the person is in hospital. Sometimes the decision takes much longer and is made over months, or even years.
There are some important things you should consider when trying to decide the best option for you and your loved one. I’ve outlined six here.
1. Your loved ones’ views around going into care
We don’t want to force our loved one to do something against their wishes. It’s unusual for someone to want to go into a nursing home. It may take many conversations and a decent amount of time before your loved one accepts they might need more care and that a nursing home is the right place to get that care.
2. Your loved one’s current quality of life
If you think your loved one has an overall good quality of life, and that their quality of life may decrease when they go into a nursing home, this could be a sign you should keep trying to support the person to live at home.
However, if their quality of life is currently poor, particularly if this is due to not having enough day-to-day physical care, health care or emotional support, then moving into a nursing home might help meet their daily needs.
Spend some time observing to figure out how your loved one is doing at home.
You could perhaps make a list of the things they need to lead a good life (company, three square meals, help taking medicines, going out into the community) and see if these are currently being met.
3. Risks if your loved one stays at home
People often go into a nursing home because we think they are no longer safe living at home.
It might be possible to reduce some of the risks of them being at home through modifying the home and using technology (personal emergency alarms, GPS trackers, stove timers) or services (meals on wheels, community care, physiotherapy for mobility).
4. Capacity of your loved one’s family and friends to keep supporting them
The availability and capacity of family carers is probably the most crucial part in supporting someone with dementia to keep living well at home. Carers often have other responsibilities such as work and children, which means they can’t support their loved one as much as they would like.
Being a carer is physically and emotionally demanding, and over time caring can take its toll. Carers should seek help and support from other family and friends, learn more about dementia, use services including respite care and Dementia Australia.
Carers often face a difficult choice between their own health and wellbeing, and supporting their loved one to remain at home. If carers are caring as much as their time, energy and physical and mental wellbeing will allow, and that care is not enough for their loved one’s needs, then more help is needed – and residential care is one way of getting that help.
5. Alternatives to nursing home care
Community care services are government-subsidised services to support older people to keep living at home. You can get up to 14 hours of care a week depending on need, though there is an assessment process and often a waiting time for services. You can pay for community care privately as well, although this can be very expensive.
An Aged Care Navigator (or from 2023 an “aged care finder”) can help you search for suitable available home care services.
Some families choose to move in with the person with dementia, or have them move in with family. This may be an option if there is suitable accommodation, and they are able to live together comfortably.
6. Availability of quality nursing home care
It’s emotionally easier to place a loved one in a nursing home if carers are confident the home will provide suitable care. Often, family want a nursing home that is geographically close so they can visit, has a suitable room (such as a single room with an ensuite), sufficient and kind staff with training in supporting people with dementia, a pleasant environment, nutritious appealing food, and quality clinical care.
It takes time to visit and pick a suitable nursing home, check it’s appropriately accredited, and understand how much it will cost. You might have to wait for a bed in a quality home. You can often trial the nursing home by having your loved one stay for two weeks of respite care.
When your loved one enters nursing home care, you’ll still be caring for them. You want to ensure you can continue to support your loved one emotionally and practically in partnership with the nursing home.
Usually there is no “right” or “wrong” decision. You might struggle and there might be family conflict around what the “right” decision is. Speaking to a counsellor might help work through the options and your feelings, you can talk to them as an individual or attend as a family.