Listening and learning from people living with dementia

My father at his 79th birthday in 2012

Earlier this month, I was invited to Elizabeth Bartlett’s house in Salisbury. Funded by Wiltshire council, she holds weekly experiential memory support groups for people with dementia and their carers. We were warmly invited with tea, coffee and biscuits and then divided into two groups, one –  for the people with dementia facilitated by Elizabeth and one for the carers, facilitated by her husband John. I spent 45 minutes with each group. They meet to share their experiences of living with dementia and living with people with dementia.

I was invited partly because my parents have been going to the group for the last few months and finding it incredibly supportive, but also because of my enduring professional and recent academic interest in the relationships between doctors and patients. The carers especially, were hoping that I would be able to share their concerns and experiences with other GPs and medical students.

Context matters.

Patients, on the whole, are afraid to criticise their own GP in person. Too much hinges on good relations, and rather than confront each other when things go badly, they tend to go elsewhere. There are of course, exceptions. All GPs, myself included get complaints and not infrequently, doctors and their patients fall out for a while and get back together again. I bring this up because one of my first impressions was that we had the kind of frank conversations that I probably would not have had with my own patients or even patients from my own surgery or even perhaps in a healthcare setting. Being in Elizabeth’s home and being in groups, which had a self-evident camaraderie gave their members greater confidence to speak out, uncovered shared experiences and changed the balance of power.

It mattered also that I was there to listen to the groups talk about their experiences. I wasn’t there to give advice, make a referral, review their medication, or do anything. I was conscious of the importance of listening and Dr Iona Heath’s remarkable essay, The Art of Doing Nothing. This morning I read through my medical students’ learning objectives and realised that even from the second year at medical school there is more emphasis on the advice they’re expected to give patients than the depth of understanding they’re expected to gain about their experiences. I’ve been trying hard to subvert this, but students are understandably focused on stuff they expect to be examined on.

Getting lost.

I began with the dementia group. One of the new members said that after she had passed the GP’s dementia test her daughter complained, ‘but mum, that’s because you’re so competitive!” I remember my father’s delight at passing the more sophisticated Adenbrooke’s dementia score. I wondered whether he might have been diagnosed earlier if the psychologist had come over for a family meal or sent him out with a shopping list. We would have happily cooked or suggested some groceries.

Both the dementia group and the carers said that getting lost was one of the first things they noticed. One of the carers told us that her husband got lost and wandered into a hotel in Salisbury where the staff made him a cup of tea and offered to get a taxi to take him home.  When he could not remember where he lived the hotel staff asked the taxi driver to drive him around until he recognised his home, which, before long, he did.  His very grateful wife offered to pay the taxi driver but he told her he had already been paid by the hotel and it had been a pleasure to help. Getting lost, and having trouble with shopping lists, was often apparent before problems with memory or confusion.

Familiar tasks and familiar places may be much easier and mask dementia. The brother of one of the group who has a rare form of early-onset dementia was working as a GP when he was diagnosed with dementia. He was still competent in his work and loved by his patients but had to retire. Many of his patients protested and said they didn’t care!

The importance of a diagnosis and fears about screening.

Everyone, in both groups agreed that a diagnosis helped a great deal. For most, but not all, the relief exceed the anxiety about prognosis, but for those with an earlier onset dementia, for example Pick’s disease, it was a great worry. Some of the carers and those with dementia had been upset by GPs that had dismissed or tried to normalise their concerns as forgetfulness. One carer recalled their GP saying, “Oh my father’s like that, it’s just old age’. They were equally disturbed by the thought of unsolicited dementia screening and thought that older people had been afraid that their GP might use any opportunity to diagnose them with dementia. They were, on the whole, relieved that the planned NHS screening programme had been dropped but felt strongly that someone coming to their GP with concerns about dementia should be taken seriously. Doctors, like everyone else, are value-laden and some believe that forgetfulness is normal or that trying to diagnose dementia in its early stages is futile or impossible. Before my father was diagnosed, I pushed for a diagnosis, but I pushed too soon, he wasn’t ready and I over-reacted after that, thinking that an early diagnosis was futile and harmful. Both groups and I confessed many GPs, shared concerns that even the most sophisticated tests for dementia can be unreliable but it shouldn’t stop us trying to find what’s causing worrying symptoms. Time, attention and re-testing are all important. Those with dementia, whose symptoms were incredibly diverse, wanted me to know that dementia wasn’t just forgetfulness. “We’re all different”, they said, almost in unison. It is often said that if you’ve met just one person with dementia, you’ve met just one person with dementia.

Better relations between doctors, patients and carers.

We talked in both groups about how to improve relations with GPs and I told them that I have found Atul Gawande’s questions from his new book, Being Mortal, slightly modified, incredibly useful. They make other discussions about care so much easier.
(1) What is your understanding of your health or condition?
(2) What matters to you?  Examples might be, staying at home, staying out of hospital or a nursing home, Staying alive long-enough to see your children marry or your grandchildren graduate,  Being able to see your friends, Having the trip of a lifetime, Keeping your interests going as long as possible.
(3) What are your fears? Examples might be; being in pain, getting lost, not getting to the toilet in time, falling over, being alone, dying, not recognising your spouse/ children etc.
(4) What trade-offs are you are willing to make and not willing to make? For example will you do anything to live longer? Take any amount of medication?Spend any amount of money? Take any risks? Where might you draw the line and why?

I think after speaking to the carers today that they are useful questions for a carer to ask the person they care for and to ask themselves. I think doctors should ask them too. I’ve written a blog about how to make sense of risk and what to ask (or tell) your doctor here. In it I suggest that if your doctor doesn’t think to ask these questions it would be really helpful (from my GP perspective) if someone came along to tell me what they thought about them.

I think it’s important to let the person who is affected to answer them. Apart from the obvious fact that it’s their life we’re talking about, it is also, on the whole, much harder for families to let go. In Gawande’s book he notes that about 2/3 of patients with cancer are willing to undergo treatment they don’t want, if their families want them to. In neurosurgeon Henry Marsh’s incredible book, Do No Harm, he gives an example of a young man with a serious brain injury with little hope of survival. He explains that you can ask the family the same question in one of two ways, “What would you like us to do?” or “What do you think your son/husband/brother would want us to do?” The way the first question is phrased you’re asking, “Do you love him enough to care for him after we’ve operated and he’s severely disabled with no hope of recovery?” The second question lifts that burden of responsibility, yet you can love him still.

Thinking about care and carers.

I think the physical, social, economic, emotional etc. burdens of responsibility on care-givers – who are mostly women, unpaid and under-supported, are enormous and without a doubt under-appreciated. The emotional labour of caring for someone with dementia can be enormous. Psychiatrist/ anthropologist Arthur Kleinman writes beautifully about the nature and moral responsibility of caring for his wife with dementia,

My own experience of being the primary caregiver for my wife, on account of her neurodegenerative disorder, convinces me yet further that caregiving has much less to do with doctoring than the general public realizes or than medical educators are willing to acknowledge

The conversations reminded me that I don’t think I am very good at thinking about care. A doctor’s work is mostly diagnosis and treatment, but surprisingly little involves care. One can be caring, but the physical work of care goes on out of sight of many, perhaps most doctors. Kleinman explains that from his experience he has learned that it’s almost impossible to appreciate what goes on if you’re not physically and emotionally involved in giving care yourself. In GP Dr Margaret McCartney’s book, Living with Dying, she describes how the emphasis – driven by healthy young men in policy, politics and research, is driven towards drugs and technology, which diverts resources and attention away from the immediately necessary human support that people need. The carers reminded me of how important it is that GPs care about the carers and one of them told me about someone she knew who committed suicide because of the stress of looking after someone with dementia. I was ashamed recently when a podiatrist form the local foot clinic wrote to tell me that the daughter of one of my patients with dementia cried at his appointment as she talked about how stressed she was. Even though I’d seen her with her father many times before, I really hadn’t paid enough attention to how she was coping. I called her and we met later the same day and I listened to how she struggled to cope. I don’t think I did anything much beyond listen sympathetically, but I am sure that it helped that I knew what she was going through.  It’s important for GPs not to take what patients and carers say at face-value. They want to put on a brave face and want desperately to be seen as coping. As a GP I’d want to validate that but not miss the fact that they really might need help.

Continuity of care.

An issue that was shared between people with dementia and their carers was the importance of continuity of care. It was at least as important for the carers as it was for the people with dementia, because it mattered so much that the professionals involved knew something of the context in which they were living and caring with dementia. In my own practice of 12 part-time doctors and over 13 thousand patients we have, by hard work and determination increased the proportion of appointments where a patient sees their own doctor, from 50% to 80% in 2 years. If we can do it, so can other surgeries. We prioritise people who have long term-conditions for whom it matters most, but try to make it happen for everyone.

The conversations were especially valuable in part, because we were not in a hospital or GP surgery, where the balance of power leans towards the health professionals and participants are more reluctant to criticise those that are responsible for their care. Having a group of people with different experiences and different GPs allowed me to hear about how experiences shared and diverged, about good and bad. It’s easy for me, or any health-professional to assume that our way of working is typical, or that we know about patient experiences because we know our own patients, but this showed me how limited my own perspective can be.

Stepping out of my surgery and into Elizabeth’s house has taught me a lot about how living with dementia affects people and families, and about the importance of context, power and relationships and the nature of care. It was obvious that for those people living with dementia, like my parents, the group is incredibly supportive and I can easily imagine how much groups like this could help carers and people who are cared for, for whom loneliness and isolation can massively add to their work.

I think that health professionals in training and in practice could learn some profoundly valuable lessons from taking a seat among those we are here to serve, and listening to their concerns and their experiences.