Three things to do to prepare for the future of social for dementia

From what can be seen in the news, the NHS is under considerable strain.  The NHS is not only about hospitals and beds, but one of the biggest news stories has continuously been about the one in ten beds that are occupied in hospital being used by people who are ready to be discharged into the community.  The majority of those patients are older people with frailty and dementia as a major part of their problem.  The COVID-19 pandemic exposed problems in the system, and current financial problems including wage inflation and staffing shortages are making things even tougher in both the health and social care sectors.  The future of social care is an issue for us all because it is the absence of social care that is keeping those frail older people in hospital. 

What does this mean for people who are already affected by dementia and those of us who can see that it might be a problem for us in the future?  As we age, or see our parents ageing, what can we do to future-proof against the day when we might be trying to live our best lives with dementia?  The most important people to consider in the future of social care are those who will need care and the family carers who will support them.  Where social care is not provided by the state, families, friends, and neighbours – the ‘informal carers’ – already fill the gaps and the need for this is increasing.  People usually say that they would like to stay at home for as long as possible, so thinking about how to make that happen for yourself, or your family member with dementia needs to start as early as possible.

Over and above what help you willingly give to others, there will be a financial burden for you as a carer.  For example, families top up care home fees, over and above what the state will pay.  Some expenses occur without you even noticing.  It starts with a little bit of help with the shopping, fuel expenses for some extra journeys to visit or carry out errands, and getting out your purse to pay when the other person is a bit slow in the cafe. Research done by Carers UK in 2020 showed that almost 40% of carers are struggling to make ends meet.  They use their own income regularly to pay for care or support services, equipment, or products for the person they care for, young or old.

 Carers who are still in employment are less able to save for their retirement and might even lose opportunities for promotion at work because they take time off and are not able to have a total focus on their career.  That will affect their pension and have a knock-on effect on their need for care in the future. So when considering availability of support, the cost of caring and the limitations of choice created by pressure in the system, what can be done in in advance?  There’s no insurance package for this, and all you can do is prepare, and do everything you can to prevent the need for care.

 First step:   Embrace the idea of caring or being cared for

When thinking about the future of social care, we all need to ask ourselves, “How will I cope when I have to be a carer for someone in my life?”  Sometimes people are so busy caring that they forget to make provision for their own future.  This involves thinking for yourself but also talking to other people round about who might become responsible for you one day. This is hard, because sometimes even carers, in the middle of caring, do not think of themselves as being carers.  Family and friends who do caring work even say that they are not “carers”.  They provide care as an act of love, loyalty, duty, kindness – or even by accident – looking after an ill, older, or disabled family member, friend, partner, or someone in their community with dementia.  It’s important to understand and identify yourself as a carer, because that opens the door to a lot of benefits and other support that would otherwise pass you by. Millions of pounds of benefits are not claimed every year in the UK, simply because people do not seek them out or even search for them on benefits sites as a “carer”.

The reliance on informal care has been increasing for years with no sign of reversing that trend.  Already women have a 50:50 chance of providing care before they are sixty years old, and men do not escape completely.  By the time they are 75, half of all men will be carers as well. For some people being older isn’t about being cared for themselves. It’s when caring for someone else starts. That’s nothing like what people used to think of as retirement.  Many carers are in their seventies, eighties, and nineties. 

Step one is therefore to understand what caring is, and to use that to seek out the help for dementia carers that is available locally from local support groups and services, or through statutory benefits calculators that are online.  And through that activity, to consider how you want things to be if it ever becomes your turn. In the absence of a cure for dementia, it is something we all have to consider.

Second step:  Work as if dementia is going to happen – design and planning affairs

Design

Maybe this sounds gloomy to some, but if it means someone can stay at home for longer and get out of hospital faster, it can give you the last laugh.  On other blogs on this site the idea of dementia-friendly design has been explored. It would be great if every house had dementia-friendly features. The basics include increasing light level, removing trip hazards and changing as little as possible so that the person can relax in a familiar environment.  If you want to stay at home for as long as possible, incorporate age-friendly and dementia-friendly ideas in your home environment long before they are needed so that you can stay put if things get difficult. And if they don’t, you’ve lost nothing.  Dementia-friendly design is aesthetically pleasing if done right. Comfortable and safe.

Be cautious about moving house in later life.  Retiring to the seaside might seem like a luxury, but moving away from your well-known community, and finding your way around a new neighbourhood could cause trouble later, if recent learning starts to fade and memories are an issue.  Staying put can be a better idea if your house is age-friendly. Younger and younger people are now looking at their homes, if they have a choice, and thinking about what it will be like to live there much later.  It’s not just about accessibility, even though that is crucial for people who are trying to get out of hospital in later life, after surgery or other treatment.  It’s about making choices that make life easier later. Having to work out where you are and where things are is exhausting for a person with dementia so minimising that sort of relocation change can be helpful.

Plan

In the light of the uncertainty about the future of social care there are two things for us all to attend to if we humanly can.  Money and family conversations.  While the politicians are arguing about what they can do, work on the assumption that there will be increased need and public funding will be just as stretched as before.  Anyone who has the capacity to make plans should do so now.  Daughters, talk to your brothers and sisters about who will lead on care for your parents if the need arises. Think about the different roles each person could lead on.  If you don’t, you may end up falling into a role in any case.  Parents, talk to your children about what you expect in the future and how it will be resourced. Get your affairs in order with powers of attorney that can be invoked if you become incapable.  Share the information your family will need now, so that they don’t have to hunt for it later.

And for those without family…now is the time to make some friends.  The state hopefully will always provide for people without family or friends, but you can’t be sure what will be provided or whether you will like it.  Read about powers of attorney, and guardianship.  Make banking arrangements so that your joint accounts will not be frozen if one of you loses capacity. Have more than one account to spread your resources in case you are subject to financial abuse.   Make sure someone trusted knows your passwords for online banking and other crucial personal affairs. 

This is not said to make you afraid, but to stop you having to think about these things, knowing that if your circumstances change, you will still have things working the way you wanted and planned.  And if you do have children, make these plans in advance with them so that you don’t leave them wondering what you wanted and maybe even falling out over what best to do for you.  An advance statement setting out your wishes while still alive is every bit as valuable as your will. Make sure they know where to find it.

Third step: Avoiding dementia in any case

It would be great if the medications coming forwards turn out to be the first signs of a miracle, but just in case, do all that you can to avoid getting dementia in any case.  The latest and most astounding news is that getting your hearing checked makes as much difference as a lot of the other things we’ve been talking about for years.  Everyone over the age of 65 should get that done regularly as a way of delaying or preventing dementia.  Eat well with a good heart-friendly diet, don’t smoke, be careful with alcohol, exercise (including weights), live well, and be merry. 

While you are doing all this there are great discussions taking place about radical change in the current care systems.  You will hear about health and social care integration, coproduction, personalisation, human rights, culture change, governance, capacity-building, participation, engagement, and so on.  For the carer sitting in her car outside her parent’s house, exhausted after a day at work and gathering her strength to go in and cook, clean, and do laundry, all this sounds like jargon.  For people with no current caring responsibilities, it might be a bore to think about it.  Ignoring your future might be OK for some, but short-sighted for others. Work on the assumption that the future of social care is going to require even greater self-reliance, and plan accordingly.  Use whatever resource you have and avoid pain by having a plan for yourself and those you care for.  Stay fit both mentally and physically as much as in your control and be part of a community that you can help, and which will help you when the time comes.  And don’t rely on crossed fingers. 

Professor June Andrews

(www.juneandrews.net)

Professor June Andrews

Professor Andrews is a dementia specialist and former adviser to the Dementia Trust. After a long career in the NHS, academia and government, June now works as a consultant to Sedaca Ltd, making life better for people affected by dementia. She is the author of Dementia the One Stop Guide.

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