On the first Friday of every month, I go along to my local Dementia Carers Support Group. I am a nurse and a professor of dementia studies, so I have nursed people with dementia in a wide range of settings for decades and have managed services.
When I was first invited to the carer group, I thought I was going to be able to show off my knowledge and understanding of dementia. How wrong can you be! I had more to learn from the carers than I had to teach. My fellow members of the group knew so much about what being a carer is like and what you can do to make life easier. Not least, they taught me that I am a carer myself.
And I have learned that the people who really know about caring and can share useful strategies are those who are on the journey themselves. I am so grateful to all the carers I have met through the group, and I share here five of the chief strategies they have told me about. The membership includes wives and husbands, neighbours and friends, sons and daughters. It includes professional highly articulate people who have studied books and searched the internet and others who have lived experience without any input or advice, just having learned the hard way what works. The oldest member is in her late eighties, and the youngest is scarcely out of her teens.
Child carers have a separate group, and carers of children with dementia also have a different source of support. They always say that every person with dementia is different, but all carers have something in common. The first common feature is difficulty or delay in identifying that you are a “carer” because the evidence is that carers are doing the job for a long time before they realise that it has crept up on them. If you have passed that barrier, this is for you.
1. Educate Yourself
Understanding the nature of dementia and how it affects behaviour and cognitive functions can help you anticipate challenges and respond appropriately. It is sometimes hard to look ahead, but some advanced warning is more restful than constantly being surprised and taken aback. Resources such as books, online courses, and a support group can provide valuable information and support.
General information about dementia is often misleading. Take for example the recent widely publicised “new medication that reduces Alzheimer’s disease”. The implication is that the medicine would reduce the dementia that is caused by Alzheimer’s disease, but in reality, the new medication is expensive, risky, and modest in its effect. It is good that progress is being made but important not to be disappointed if this new thing is not offered to you. If you have been told which of the many diseases is causing the particular dementia that you are dealing with, it may turn out that this is not Alzheimer’s disease at all. Each of the dementia causing diseases has a different profile and knowing about which one is involved in your case allows you to find specific responses.
Some organisations offer courses that are free or low cost which allow you to learn about what dementia is, how to get a formal diagnosis, where to find out and access financial benefits and what help that health and social care local to you can offer. You can also get information on the sort of behaviour changes you might expect and practical advice on how to manage your own response to that change. This includes sleeplessness, becoming lost, agitation, anxiety, changes in appetite, and difficulty in ordinary daily living. You can also find free information and links to resources on websites such as www.juneandrews.net which has an A to Z of dementia and the NHS website.
2. Change as little as possible
Creating a consistent daily schedule can help reduce confusion and anxiety for any person with dementia. Routines provide a sense of stability and predictability reducing stress for the person, which can make your own life easier as a carer. Some changes you can make in the organisation of your home will make things easier if you declutter the environment so that the person can see the things they regularly need to use and are less likely to get agitated trying to find anything. If you only do one thing, increase the light level. For some people it can make more difference than any medication does.
3. Take Care of Yourself
Caregiving can be physically and emotionally draining, so it’s crucial for carers to prioritise their own health. You cannot pour from an empty cup. Research shows that carers do have more health problems than the rest of the population and these problems increase as the dependency of the person with dementia increases. Regular exercise, a balanced diet, adequate sleep, and taking breaks are essential, but it is hard to ensure that for yourself when caring keeps you very busy and tired. Seeking respite care or asking for help from family and friends is necessary but that in itself is not easy. A person with dementia is entitled to a social work assessment and the carer is also entitled to an assessment of their needs. Making sure the GP knows that you are a carer allows them to provide help to you.
Carers tell me that sometimes people offer help but it is not the right help. Someone might offer to do some shopping for you, but in fact going to the shops is one of the bits of respite you enjoy. You would rather they sat in at home with the loved one or took them out for a walk so that you can be on your own for once. The carers have had to learn to be bold and specific and ask for the help they want, not just accept what people offer. One wife told me that she felt it was cheeky to ask but realised that the friendly offer was from someone who was open to suggestions, and only wanted to be useful, but didn’t have a real idea of what “useful” is in dementia caring. Family dynamics also come into this as people find it hard to get other family members to help. There is in German the “Voruhreffeck” which is the thing that happens if your washing machine starts working when the engineer appears, or the person with dementia perks up in the presence of your sister-in-law, who then goes round telling everyone else that you’ve been exaggerating the symptoms. It’s important to recognise that managing this is part of caring for yourself.
4. Use Effective Communication Techniques
Communicating with someone with dementia requires patience and understanding if you want to reduce your own stress. Use simple sentences, maintain eye contact, and be mindful of non-verbal cues. Most of all, avoid arguing or trying to correct the person, as this can lead to frustration. Don’t try to contradict the person even if they are wrong, because you may not be able to protect yourself from the effects of the stress that this causes in them. It’s not worth it. At the carers’ group I attend there are shouts of laughter as we recall times during the previous month when we have forgotten this cardinal rule and ended up having to deal with a cross person for the rest of the day. This illustrates why number five is one of the strongest bits of advice for coping.
5. Join a Support Group
Connecting with other caregivers who understand the challenges of dementia care can provide emotional support and practical advice. Support groups, whether in-person or online, offer a space to share experiences, vent frustrations, and learn coping strategies from others in similar situations. General advice from websites and books is very useful, but the best information about social services, for example, is from someone just a bit ahead of you on the journey who has dealt with your own local social services, perhaps with exactly the same staff and personalities that you are trying to learn how to deal with. They can tell you where the hazards are in the path ahead and how to avoid them, and where the shortcuts and useful resources are.
Implementing these strategies can help caregivers manage their responsibilities more effectively while maintaining their well-being. As I discovered when attending the carer’s group, no one really knows that they are a carer to begin with and there is a lot to learn from others. Recognise what you are doing and seek help before it starts to become too much for you.
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.
