Most people want to stay at home as they age. Yet for many people living with dementia, chances are they will need to move into a residential care home at some point in their journey. Over half of all Australian aged care residents are living with dementia, and most of those are in high care.
For people with dementia, a move to residential care is often the result of a crisis or major health issue. Almost 50 per cent of residential care admissions of people with dementia come directly from hospital. This means the decision to move out of the family home is rushed and often unplanned, and made at a time when the person and their family is very emotional. You may need to take the first place available, and this may not be in your preferred care home. For these reasons, it is important to start conversations around future aged care early.
Moving house is considered one of life’s most stressful events, and moving into a residential care home comes with its own misnomers. Some people consider residential care as a step away from freedom and independence, and a step closer to death. “God’s waiting room” is a term often used.
Moving can be difficult both practically and emotionally for everyone involved. By the time a person with dementia moves into residential care they are often in the mid to late stage of dementia and not able to understand the reason they are moving. Whether a person has dementia or not, they may feel confused, frightened and disempowered by a move. They may have issues around privacy, feel discomfort around strangers, have reservations about the cost, or fear losing their freedom. They may not be aware of their limitations and be adamant they are staying at home. Regardless, they should still be involved in the process of deciding about their future living arrangements.
As with many things, it is best to talk about the future before a crisis occurs. Start conversations early and have them often. This will help to normalise the conversation around aged care but more importantly will help you to find out what the person wants for their future, while they can still tell you about it.
How do you start a conversation about moving to residential care? Start by planting the seed. Ask questions around where the person would like to live when they are older, when they might need some assistance. Comment on all the available options now – such as having help at home, moving to an independent living village or how residential care has come a long way since their parent’s days.
Focus on the positives of a move one day, such as no longer being responsible for maintaining the home or completing daily chores. Other positives include having more opportunities to socialise, meeting new people and making friends, taking part in activities they otherwise might not get a chance to. You could also emphasise the safety aspect, especially if the person is currently living alone.
Offer to visit a few care homes with them. While visiting, ask for their input – what they liked and didn’t like. Ask about their preference for a private or a shared room. Whether they want to be involved in regular daily activities or prefer to have places for quiet contemplation. It may be important to the person to have food freshly prepared on site, to have the option to eat in small intimate groups or alone in their room. All of this information will help to build a picture of the right care for your loved one, if and when the time comes.
If the person is resistant to the idea of a move, yet it has become necessary, seek the help of a professional they trust. Your loved one may be more inclined to be guided by their GP or pastor. You could also ask for recommendations from friends and family members.
Legal documents such as an Enduring Power of Guardianship can be very useful at this time. The earlier these are completed the better, as a person must have legal capacity. To help facilitate the process, you could complete one for yourself at the same time or mention people you know who already have done this. Stress this doesn’t change anything now, however it will be a big help to the family with decisions about where the person might live in the future.
We all want to stay in our own home for as long as we can. Perhaps at this stage, a move to residential care is not necessary and some in home support might be helpful. However, at some point it may be in a person’s best interests to move into a residential care home. Although this can be difficult time and lead to feelings of guilt for family members, having had the conversation will make the decision easier.
Tips for talking about future care:
- Start talking now about future living arrangements
- Talk positively about a move to residential care
- Involve the person and let them feel like they have control over the decision
- Find out as much as you can about the person’s preferences now; this will help later on if they are unable to communicate their wishes
- Revisit conversations often, as your loved one may change their mind about something or provide you with additional useful information.