Dementia in its different guises is a very difficult condition to handle for carer and patient alike. People with dementia can be disorientated, confused and frightened whilst their carers can experience feelings of being overwhelmed by the challenge of caring for somebody that increasingly doesn’t understand what’s happening.
Dr Nori Graham is Medical Director at Red & Yellow Care; Vice President at The Alzheimer’s Society; and Vice President at Alzheimer’s Disease International and spoke with Able about the urgent need for specialist clinical services after diagnosis.
As you know, the Alzheimer’s International Conference recently suggested that 40% of family care givers have depression or anxiety. That seems to be a damning indictment of how families that include people with dementia are being treated. What’s your view?
Well, I think we all know that somebody who has a diagnosis of dementia and is living with maybe a spouse or another member of the family or a close friend is not going to find life easy. It’s a condition that often lasts for many years and it doesn’t stand still. It slowly progresses and goes downhill at variable speeds. It’s different for every person and for the person with dementia and the person living with them. There’s a lot to get used to, to adapt to, to know about. This is why I think that after diagnosis it’s really so important for people to have access to a named clinical specialist. It could be a doctor though it’s often much easier for people to talk to a nurse who will find out all about them – know their whole history and understand the condition and be with them throughout the journey. It may not be all that necessary in the early stages but as things change it’s really important to have someone to be available, to advise. Having such a person there, we know, makes a real difference to people living and caring for people with dementia; because otherwise it’s just very distressing and yes, people do get depressed.
Is that the essential starting point that your organisation adopts?
It is. Although the service includes assessment and diagnosis – its main focus is flexible integrated care after diagnosis with a named person who is usually going to be a nurse and a named consultant who you might see only once or twice a year. We aim to provide continuity and having a single point of contact – those two things are not high-tech. It’s just so obvious – we all want that, whatever’s wrong with us. We’d like to know who we can contact, who we can ask questions of and who might come and visit us, sit with us, listen to us – all that is so important. That is what Red and Yellow Care is all about.
What are the common difficulties for carers? What do they most want to speak with you about?
It varies from knowing how to make the most of everyday life to how to be helped to let people with dementia help themselves. For a person with dementia, it’s really important to be as independent as possible. We try to help carers work out how to manage that and not do everything for the person with dementia. Sometimes a person with dementia really doesn’t understand what is going on and that is why they resist things you want to do with them. If someone doesn’t want to change their clothes for example because they don’t really quite understand – it’s how to manage and how to get around it in the nicest possible way. So it’s advice for carers who say, for example ‘We don’t know how to manage some of these difficult things that happen regularly’ and who want to know how to maintain a reasonable life for themselves when they are living with somebody with dementia.
Whatever’s wrong with you you’re still the person you are with your own past history, the things you like doing, your likes and dislikes. You want to be included. So it’s helping carers to understand that it’s important for people with dementia to be part of decision making; to be part of everyday life, just as they always have been.
I visited, not so long ago, a very elderly couple where the lady had progressive dementia and the much more elderly gentleman was the main carer and he used to take his wife out to social occasions. She wasn’t expected to take part in an active conversation if she didn’t want to but it gave her a feeling of continuing to be part of a life that she had always been part of and had good memories of.
It’s thinking, for example, ‘how shall we engage with the person that has dementia?’ Lots of people feel you retain your long term memories for much longer with dementia than you do your most recent memories but for some people it’s a real struggle to answer questions even about the past. If you can see that it’s a struggle and strain it’s much better not to ask questions – it’s better to try to enjoy what you’re doing day-by-day and relate your conversations to things that are currently happening in your lives together. So there is all sorts of advice that can be given and of course, it has to be tailored to the individual. Everyone reacts very differently.
There are also practical concerns to deal with. For example, I suspect that before your involvement, the elderly gentleman you mentioned was probably helping his wife to dress and maybe to stand up and so on.
Increasingly, we’re finding that we are supporting people with the domiciliary care element because really understanding and care should go hand-in-hand. Often you have people coming in for the dressing and washing on a daily basis who don’t know about things in as much detail as would a specialist, for example why particular things are difficult for this person and how to get round it. So I think part of the role of the specialist dementia nurse is to support people who are actually doing the day-to-day caring – I’m talking now about paid carers as well as family members. In the case I’ve just described to you the elderly gentleman who was over 90 couldn’t possibly have done what we’ve just described. He had to have regular help for his wife to carry out some of those tasks.
Dementia is clearly not just a challenge for the patient, but for their carer too. The classic (stylised) examples are either that the person with dementia doesn’t know what’s happening and they don’t care or that they’re holding on and they’re trying to get out – which produces anger and frustration.
Because we’re able to diagnose dementia much earlier now, people with dementia have much more insight into the fact that there is a problem. Many people with dementia do get depressed as well, of course, and I would like to say that often it’s not one or the other but both. Every time a person with dementia is diagnosed, you’ve really got carers to support as well. I think, to be honest, it can be equally difficult for both and that’s really why it is so important for there to be a much more positive attitude to the disease itself for people to lead a reasonably good life with dementia.
It’s possible for anyone to have a good life and the same principles apply but these have to be worked on a bit. People can be helped by being pointed in a particular direction. Yes, you can allow your husband, who has got dementia, to go out but take care that he’s got his name on part of his clothing. It’s adapting, and I think carers find having this encouragement, support and advice just makes life better for them and of course it has an immediate knock-on effect on the person with dementia. It’s very important as well for friends not to stay away but to maintain relationships. Lots of distractions for the person with dementia allow both (carer and patient) to have time off from each other. The person with dementia needs time out with others and the carer needs time out with others – when they come back together again, they’re refreshed.
Detecting dementia has become more effective and led to earlier diagnoses. How has this occurred?
The whole business of earlier diagnosis has been more to do with raising awareness of what the symptoms are and encouraging people to go to their doctor. Diagnosis is still mainly made on historic symptoms and investigations, even though the recent press has given us hope that there might be some better way of testing for some dementias in the future. At this moment, there is no test.
What is your advice for people who have just received a diagnosis of dementia?
I think firstly, to treat the person in their own right and allow them some independence but also to include them in your life and in decision making. It’s really to carry on as best you can, adapting to the changes that are occurring.
I remember saying this to a group of carers in India and one of them came up to me afterwards and said ‘you’ve taught me something. I’ve been putting my wife, who has got dementia, in the corner of the room and not including her in our mealtimes and conversations’ – that sort of behaviour clearly makes people feel completely disorientated.
Another important thing is to maintain a healthy lifestyle for the person with dementia as well as yourself, ie: a reasonable diet and as far as possible, taking some physical exercise – going for a walk on a regular basis because physical health is really important for mental health. This is why we talk in Red and Yellow about integrated care; it’s looking at health across the board, mental health, physical health and social health.
About Red & Yellow Care
Red & Yellow Care offers specialist care and support for people living with dementia. By treating the whole person, not just the condition, they help people with dementia and their family to enjoy life beyond diagnosis.
Their multidisciplinary team uses the latest clinical evidence, patient research and understanding of the condition to provide the excellent diagnostic assessment, care and support available.
Red & Yellow Care is an independent healthcare company registered with the Care Quality Commission.
The Alzheimer’s Society
Alzheimer’s Disease International
Alzheimer’s Research UK