What type of care is available?
This page covers:
• How difficult it can be to think about needing care in the future
• Planning before reaching a crisis point
• Planning for the costs of care
• Thinking about moving or adapting the home
Planning for care in older age is something people often put off. Some people find it an uncomfortable conversation to have with family. The people we talked to told us about how they or their families had planned for the possibility of future care including how to pay for it. But many people said there were things they wished they’d thought about sooner. Here we talk to people about their experiences of planning and paying for care. That might be thinking about possible care needs long before it happens or, when people are in a care situation, planning ahead for an increase in care needs.
Jennifer recommends giving participants more detailed feedback of study results.
Louise thinks it’s important to contribute to long-term studies which can develop understanding and knowledge of how society operates.
Some people found it upsetting to think about future care needs.
Anne plans to donate her body to science when she dies, which she sees as another research programme that I’m going into in the future.
Planning ahead – care options
People said that it was important to look at information about care options and see what’s available before a crisis came along. But most people admitted that they had not done that and just hoped they wouldn’t have to face those decisions.
Emily completed a questionnaire over the phone for one study and it was difficult remembering all the tick box options without seeing them written down.
Luke thinks that researchers sometimes frame cohort studies as health MOTs’ to appeal to participants. He cautions that this type of research shouldn’t be relied on for health monitoring.
Guidance on care options
For some people we spoke to, guidance on care options was available. Wardens at sheltered accommodation helped people to think about where they would like to move to if they needed more care. Jane felt there was a sort of ‘pathway’ from sheltered accommodation to a care home if that was what was needed. Some people said visiting friends who had moved into residential care was a good way to find out about what is available locally.
When thinking about moving to residential care it can help to know what level of care the care home can provide. Lynne told us that she knew her mum and dad would never have to move because their residential care home could provide nursing care if they should need it.
As a mum, Eisha feels passionately about research that can benefit future generations. She is involved in a cohort study as a participant and a patient representative.
Alan Y doesn’t remember a lot about the information he initially received but recalls that it was helpful to discuss with a member of the research team in person soon afterwards.
Planning for later life care costs
The cost of care is another important part of planning.
Eisha believes her cohort study is doing [an] amazing job at bringing change to her local community.
The study team started sending a newsletter instead of a Christmas card which helps Anne to feel more up to date. She appreciates they are letting people know what’s happening and keeping in contact.
Many of the people we spoke to said the most important thing was to get Lasting Powers of Attorney. For more about this, see Lasting Powers of Attorney. This allows people to arrange finances or make health decisions on behalf of their partner, family member or friend.
Isobel isn’t sure why she was selected to join a birth cohort study. She attended a meet-up a few years ago, but doesn’t remember taking part as a child or completing any study activities as an adult.
Moving house
Some people thought about moving house to somewhere smaller or better equipped for care needs.
Teresa says that processes, like giving consent, can be overdone in some studies and that repeatedly asking isn’t respecting people’s time.
When adult children live many miles from their parents some people think it is a good idea to move closer. Beverley said she wished her parents had moved nearer to her when they were in their seventies. Sinclair and his wife were happy that they moved to live nearer to their children.