What does it mean to be the “carer” of a person diagnosed with dementia? In some cultures, there is not even a word that means “carer”. Taking care of someone is just what you do, whether they are your spouse, or your parent, a friend, or a neighbour. But the truth is that in millions of families and communities around the world, someone needs extra care and the person who takes on that task could be described as a “carer.” Unlike childcare, which is a result of something joyous and maybe even longed for, people yearn for their loved ones to be independent and well until the end of life without ever needing their care.
When it happens a carer often feels rather alone. Although awareness of dementia is increasing because of work done by international agencies such as the WHO, government health departments and Alzheimer or dementia organisations in many countries, it is still a work in progress. It has been an uphill struggle. Mental health and behavioural issues have historically been stigmatised. Ageism is a fact in many societies. Dementia itself is more common in women than men, and the people who do hands-on support are often female in a world where “women’s problems” don’t always get the greatest attention. Any disability seems hard for many “able” people to respond to. Things are definitely getting better, but how much better depends on where you live and what resources you have. It can be lonely trying to hack your way through an administrative and informational jungle, and to deal with attitudes even in your own family and community.
Everyone with dementia is different. Every family is different. It is tricky to find five practical hints that will be relevant to everyone. Nevertheless, research and experience show that there are some universal truths about the challenges for people who support someone who is affected by dementia, so, here are five actions to consider.
- Talk to other people about it and think of it as a new role (at least a bit).
Allowing yourself to be identified as a carer might feel difficult. The label implies that you have taken on a different character from being just a daughter, son, husband, wife, or friend, and that can be uncomfortable. You may believe you are only doing what anyone in your position would do. That’s not strictly speaking correct, of course. Some people don’t take up that challenge. Even for those who gladly do, looking after someone affected by dementia can be difficult, and the changes might ultimately be problematic. But for a long time, things will be just as they always were. From a practical point of view, there are many benefits and supports that you cannot access if you completely avoid being described as a carer. An example would be Carer’s Allowance, or the support of a local carers’ organisation. Talk to any organisation and friends you trust about what you are going through. You may be surprised to find lots of other people have had, or are still having, a similar experience. Someone just knowing what you are going through is supportive in itself.
- Get a specific diagnosis as soon as possible
Often the person has been having almost imperceptible changes. A daughter might say, “It was only when I looked back over the last three or four years, I could tell you about things that had changed, but I just didn’t see them at the time.” Sometimes people who are starting to have dementia are so afraid that they labour very hard to disguise problems. The people round about them might also be in denial and collude with that, dismissing changes that may be a sign that help is needed. If people are afraid about the future, they try not to think about it. Research has shown that many people are more fearful of dementia than they are of cancer. The idea of it makes the person worried, or depressed, and sometimes even ashamed. So, they ignore the signs, hoping they are mistaken, or that it will just go away.
The practical thing is that there are many things that look like dementia but can be cured. It’s a shame to live on with an infection, blood problem, depression, or other annoying condition and not have it treated. And even if it is dementia, an earlier diagnosis can give the person access to medication, or other supports that will make life easier. It gives the person time to start lifestyle changes that will help them stay better for longer. The GP won’t mind you asking. The waiting times for memory clinics are long, so get in the queue as soon as you can. Facing it doesn’t make it more probable. Information is power. The internet is awash with generalisations about dementia, but you need some specific information about what disease this is that is causing the dementia of the person you care for. Knowing what might happen helps you plan and reduces future shocks.
- Support the person you care for to make future plans
There is an old story where a man asks another for directions when he is lost on the road, and the reply is, “Well, I wouldn’t start from here.” Many people put off making future arrangements like granting a Power of Attorney or making a living will until there is the crisis of a dementia diagnosis, but it would be much better if we all had thought about these things much earlier on the journey of life. Talking about our future wishes may seem hard, if we’re not good at contemplating illness or death. An early diagnosis allows a person to make plans while they are still in a good mental position to think about it. It might be that someone else is in a better place to share those conversations than you, as their carer. Most importantly, do not assume that the person lacks insight, or is unaware of what is happening. Respect their wishes and take time. But as a carer, your life will be easier if you can get a realistic idea from the person you care for about what they want for the future. This will make your life much less stressful when the time comes where you finally have to make decisions for them. That time will surely come. It is a comfort to carry out their wishes rather than argue about what they might have wanted, perhaps with others who have a different, maybe less justified, view. Support them to be self-determined to the last possible time. Give them that dignity.
- Accept help where you can find it – and ask for more from other sources.
One place to start is with the GP. Let them know that you are the carer, and if needed, show them your Power of Attorney certificate. GPs can keep an eye on your own health and offer your appointments around the same time (called double appointments) to reduce your number of repeated trips to the health centre. They also have information about local carer organisations that can signpost you to benefits and concessions, saving you time and money. Caring costs financially as well as making demands on your time and well-being. If you have brothers and sisters or other relatives, and you are the main carer, you may need to ask them directly for help. This means making specific requests. They may be in denial about the need for help. It is well known that when a less involved person shows up the person with dementia can put on a show, and make it look as if you have been exaggerating their level of need and being overly negative. Sometimes this happens when you bring in medical or social staff for assessments. They may not realise that the situation only looks unremarkable because you are exhausting yourself to keep up appearances. The person perks up during the visit and nosedives after, when alone with you. That means people don’t offer help or try to think up ways they can support you. It’s another job for you, to gather these resources, but worth it unless it starts to be stressful in itself. If other family members don’t seem to accept the reality and get involved, you just have to move on.
- Take care of yourself
Advice in the popular media about any busy person loving yourself and taking care of yourself covers soft stuff like taking exercise, keeping a healthy diet, meeting with friends, and keeping up with things you enjoy such as taking leisurely baths by candlelight, meditating, relying on your faith. Of course, you must do all of these things. Always and as long as you want. But there is different practical advice for carers. That advice is in numbers one to four on this list.
The difference for you as a carer having to take care of yourself is that it’s not an indulgence. You need to protect yourself. You must adjust to the reality of the situation, and your new relationship with the person. Being in denial and allowing others to be in denial makes your life harder, in ways that no amount of self-care will cure. You won’t even have time for self-care if you don’t ask for and allow help. For that you need as much specific and relevant information as you can get, and the earliest diagnosis possible, to allow you both to make plans. Those plans are for now, to live as well as possible for as long as possible, but also for the future, to free you from uncertainty about what the person would have wanted. And you must seek out and accept help wherever you can. There are people who will help you who are only waiting for you to ask. Practical love is the best kind, and carers need to receive that as well as to give.
Professor June Andrews