UNTIL three years ago, Sara, now aged 77, was working in Boston, in the United States, as a clinical psychologist. Her doctoral training was at Harvard, and in her field she was a leader, supervisor, and teacher. Just before the first national lockdown, she moved to the UK, with high expectations of a new life, offering her expertise to a number of charities.
Neither of us ever imagined that Sara could possibly develop dementia. She was healthy in every way, ate well, exercised, and had a very sharp mind.
Possibly the first warning sign that something was not quite right with Sara was when she lost her way returning home one day, as in the film Still Alice, where Alice (Julianne Moore) gets lost on her usual jogging route.
At the time, we interpreted that with a plausible explanation: a new country and heightened stress owing to lockdown. And, for a while, we continued to interpret unusual behaviour within the context of stress and depression.
I now realise that, for Sara, her increasing anxiety was, in large part, not due to either but the result of her being aware that something was clearly wrong.
Sony MusicStill from the official video of “Dance Me to the End of Love” by Leonard Cohen, 1984
Two years ago, last month, we were told by a neurologist that Sara had Alzheimer’s. The diagnosis was confirmed with a brain scan, coupled with psychological tests to judge her level of cognition: Sara was in the early stages of mild cognitive impairment.
The diagnosis was a particular tragedy for both of us. In Sara’s case, her first husband abandoned her very early on in their marriage; she was left a single parent for 15 years. And my first wife, Kathryn, died of brain cancer, 13 years ago.
We met each other at a psychology conference in the US, and married six years ago. Sara’s diagnosis came four years into our married life, at the same time as all the horrors of lockdown. It was devastating for us both: we were looking forward to a new life together, after painful personal trauma.
WE ADJUSTED slowly to the news, encouraged by inspiring books such as What I Wish People Knew About Dementia by Wendy Mitchell (Bloomsbury 2022). Our expectation was that the journey of living with dementia would be a slow one, which, like Wendy, we could adjust to with the help of family and friends.
The focus from my reading was on making the necessary practical, physical, medical, social, and legal arrangements to support Sara. Medical professionals said very little about what to expect.
At the time, I imagined that the many years ahead would be difficult, but that we could adjust to Sara’s gradual loss of short-term memory. I thought that she would remain content in that changing inner world, provided there was enough support. And I am sure that I was not alone in thinking that, when a person with dementia needed to live in residential care, it would be the end of a slow journey of deterioration.
Wendy Mitchell was diagnosed with early onset dementia nine years ago, at the age of 58, and she is still adjusting remarkably well. In Sara’s case, her cognition deteriorated rapidly. And it has been terrifying.
Over a very short period of time, Sara stopped being able to remember our address. She struggled to read and concentrate, when previously she could read a book in a day. And she found it harder and harder to play with the grandchildren. She had the awareness that she wanted to, but couldn’t make the connection from desire to actually doing. This became deeply distressing to her.
Within a year, Sara had also given up yoga, which she had practised for 40 years, because her brain was unable to co-ordinate the movements. She stopped writing poetry, which she had written prolifically. She couldn’t answer the phone, pick up an iPad, understand her accounts, or pay a bill.
She became increasingly anxious and frightened, waking up at night and crying out: “Who am I? I am not a person any more. Sara has died.”
It was at this phase of the illness that Sara became acutely aware that she was losing every part of herself that formed her identity. She would say, to me, things like: “I want to be a normal person again”; “I can’t find a way to find myself”; “What’s wrong with me, I feel I have died”.
This was the horror of dementia in her inner world. It is terrifying for her, as it is for me as I try to accompany her on her inner journey.
DOCTORS have been perplexed about why her deterioration has been so rapid. Sara is now in the final stages of Alzheimer’s: she is dependent on me for everything.
Even a couple of months ago, she could walk with my help; now, she’s in a wheelchair. It’s not because her legs are unable to move, it’s because the cells in her brain that connect her muscles with movement have died.
Sara is a clinical psychologist; she did a huge amount, when she was working, in terms of her own psychological health. So she had done absolutely everything anyone could have done to repair the psychological damage in her own life. But one of the things I discovered with this dementia is that it unlocks parts of the brain that still have those very primitive memories of trauma.
So, we had a period of about four or five months where Sara was waking up through the night absolutely terrified. Whatever was lodged in the deep recesses of her brain came out, and I would spend three or four hours, in the middle of the night, trying to bring her back, helping her to calm, and not be so frightened.
WHEN I started in mental-health services 30 odd years ago, I would visit what was known as the “back wards”, or dementia wards. I still have vivid memories of elderly people calling out, in their chairs, in front of a television. I was told by the nursing staff that the calling out was just part of the condition.
In contrast, I’ve discovered that, when Sara calls out, it’s part of the confusion that she is experiencing in that moment, because she can’t connect the words to communicate. I always respond immediately, as I assume she is trying to make contact, either within herself or with me.
In my training as a psychologist, I learned how important it is to listen — not just to the words of someone, but to the tone of their voice, the melody in their voice, the age of the voice. So, all the time I’m trying to listen to what the sound of her voice is saying, which gives me some good clues about what she’s trying to communicate. I also focus on trying to understand what her face is saying.
Even in this late stage of dementia, most times I manage to bring her back to the here and now. Sometimes, it can take an hour, or longer, to help her to know that she can feel safe again, and that her calling out has been heard and understood.
By keeping Sara’s brain active and in the present as much as we can, we hope to keep her from turning inwards, and slow the progress of the journey that she is on. There is a body of research which also suggests that brain cells can be regenerated.
Contact with the past
EVERY day, we take a month of photographs from “the cloud”, and Sara and I recall precious times together. I’ve put together emails, texts, photographs, and music: a journey of our life together over the past six years. When Sara looks at the photographs with me, she remembers and she smiles.
Music is another way of helping the brain make connections. I know all the music Sara and I have enjoyed, and we listen to different types of music throughout the day. Recently, we were listening to Leonard Cohen’s “Dance Me to the End of Love”, and I noticed Sara moving her legs. I said “Shall we dance?” And we did. For the past month, we’ve been dancing every day to that song.
There are so many thoughts and feelings that are not in our cognitive awareness: “the unthought known”, it is called in psychotherapy. I think that that is happening with Sara when we dance: the music, combined with being held is, in that moment, connecting something in the brain with her body that is beyond thinking.
When we’re dancing, Sara’s whole body wakes up. And, after six minutes of the song, her words become clearer. She is quite exhausted afterwards, but more present and alive — even her face looks different.
Every evening, I read Sara’s favourite poetry that we both enjoy. This creates a sense of familiarity for Sara, and connection between us.
Contact with people
THIS, I believe, is the most important need that Sara has. But, as life has got more difficult for Sara, friends have slowly dropped away. It would be especially good if friends from church would visit.
Sony MusicStill from the official video of “Dance Me to the End of Love” by Leonard Cohen, 1984
Not many people visit any more. Neighbours have stopped asking how Sara is. And we no longer receive invitations together from anyone.
I have had to create our own village. It consists of our family, a few close friends, and a wonderful carer whom Sara loves and always responds to with a warm smile. We are also able to keep in contact with family and friends in the US using FaceTime.
The grandchildren bring normal life into the home in a way only children can. And Sara relaxes quickly if someone is treating her normally.
When people do come round, Sara often says that she feels invisible. Because so many people with this condition end up in nursing homes, people are not used to people in the community living with this condition, particularly at a fairly advanced stage. So, I think that’s one side of it: people just don’t know what to say.
Another is that, I think, people are genuinely frightened by dementia. One in six of us will end up with some form of it. And the losing of your mind, and who you are, is an incredibly frightening thing.
Many friends of Sara’s from the US, who are also in the field of psychology, have made the assumption that she won’t remember them. That is the wrong assumption.
People who are in contact regularly — the grandchildren, my children, carers, and friends and family from the States who have kept contact through FaceTime — Sara remembers without hesitation. Every afternoon, we normally phone someone, to keep this sense of contact and connection again.
We appreciate it when someone calls round. “What have you been doing together?” is a good question to ask. Now, I make sure that Sara and I are sitting together, so that I can start to answer, and draw Sara into the response.
Part of allowing awareness of the present to stay alive, is to continually have hope. So, I’ve arranged for Sara’s daughter, Moira, to come from Las Vegas at the end of this month. Each day, we look at the photographs of Moira and talk about her forthcoming visit. Sara smiles and says: “Good, good, good.”
Contact with creativity
THE carer and I try all sorts of activities with Sara, to keep her brain alive. At the beginning of the year, she found this gift to paint. Sara’s never painted in her life, but she painted the most amazing things. Sadly at the same time, however, she lost movement in her legs, and the ability to connect her brain with her arm and hand, to paint. We’re trying to get that connection back at the moment by trying to do some colouring.
When the weather is fine, we go out for a drive, get the wheelchair out, and take a short walk somewhere. We do a short practice on the piano together, to try and see if we can learn some notes, because we were wanting to learn the piano together. We have our dance at the end of the afternoon. As mentioned before, the evening is usually spent reading poetry together before bed.
Contact with loving care
IT IS easy for care to become automatic rather than loving and affirming. Slowing things down can mean, for example, spending 50 minutes over a meal together. Trying, constantly, to keep Sara in the present reduces her level of anxiety; to still feel, in all of this, a person.
Sara was struggling to sleep peacefully at night. She was having nightmares; calling out, all sorts of things. Having bought two recliner chairs, I noticed that, when she was having her rest during the day, she would sleep soundly.
Now, we go to bed in those chairs. And, for the past month, Sara has been sleeping the whole night through. I think she just feels safer, more contained.
Contact with the spiritual
EVERY morning we start the day by singing the two hymns we sang at our wedding together: “Amazing grace” and “Morning has broken”, while we look at a picture of the place where we got married. Sara always joins in with the singing.
Sony MusicStill from the official video of “Dance Me to the End of Love” by Leonard Cohen, 1984
I say the prayers again that we shared at our wedding, and we spend time listening to devotional music. The music that Sara responds to most is the old Taizé music; we sing the Taizé chants together. Sara responds to those really well. They seem to give her peace. And I believe there is a connection there that is beyond us: with God, and with each other.
We listen, slowly now, to a daily talk from a monastery in the US that we used to visit: the Cowley Fathers, or Order of St John the Evangelist, which relocated from Oxford to Boston. This is the routine of our mornings.
In all these ways, the hope is to keep in meaningful contact with Sara, even for short periods during the day. I still see the true Sara within all the struggles. And I wake up every morning, praying: “Lord, don’t let that contact go.”
How, as a Christian, do I give any meaning to this journey we’re on? I can’t. It is a cruel syndrome.
For me, the only way I’ve come to make any spiritual sense of it is that the Lord has given me the strength and the grace to give everything possible to Sara. I pray that his love through me will touch her, and hold her, for the rest of our lives together.
The Revd Dr Nigel Copsey is Spiritual Care Co-Ordinator and Team Leader in the East London Foundation NHS Trust. Having undertaken the first qualitative studies on mental health and spirituality in the NHS, he has so far established five departments of Spiritual Care in NHS mental-health services. He is also a psychologist working with research students at the Metanoia Institute, London. nigel.copsey@nhs.net
Support on entering a ‘foreign land’
IN MY training as a psychologist and psychotherapist, older persons with dementia were never mentioned. In mental health, there is an assumption that dementia is just one of those conditions which, as you get older, you might get. It is, in fact, the biggest cause of death. One in six people over the age of 80 will live with it.
I believe that every person living with dementia should be offered a level of psychological and spiritual support which enables them to be seen and heard, as they enter a “foreign land”. No person should enter that land alone. Their inner world needs to be joined by another.
It is frightening and very isolating to lose your sense of being a person. I believe that chaplains have a key part to play in supporting those on this journey, both in hospital and in the community.
I know it is possible, with the use of music, dance, photos, and videos, to help someone stay in the present. Sara and I have only a short history together. When we connect to those events, we share them again, which helps Sara’s sense of being alive. It is not important how much a person remembers. What is important is to continue in the present; to feel like a person.
We need change in our system so that, as soon as a person is diagnosed with dementia, both the person and the family are referred for psychological support.
NHS chaplaincy teams could work more closely with occupational therapy teams to help provide this.
Occupational therapists have expertise in how to keep people’s minds active. And a good team will also have knowledge of each patient’s history, and spiritual background. So, it would be a question of chaplains’ joining those teams, and trying to work more collaboratively.
There is also a great need for people not to feel isolated on this journey. And I think churches have a role a crucial role to play in providing support. If it is possible for a person not to turn inwards, especially when they get into the latter stages of dementia, then fewer people will end up in institutions, alone.
Many churches run dementia cafés and clubs. The problem of naming something for one group is that you restrict it, and almost stigmatise those who attend. Whereas, bringing together anybody who’s having a difficult journey is something that churches could easily do. Many things could be done at that preventative level by church communities.
Dementia — and what causes it
DEMENTIA is a general term for a decline in cognitive abilities. It first affects areas of the brain that deal with memory, and moves to parts of the brain that control other functions. Eventually, dementia causes major organs to stop working.
There are more than 400 different types of dementia. Alzheimer’s is the most common in the UK, making up 75 per cent of diagnoses. Alzheimer’s is a disease that speeds up the normal ageing process of the brain and causes dementia.
Factors that increase a person’s likelihood of developing Alzheimer’s include cardiovascular disease and family history.