Dying from dementia—a patient’s journeyBMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a1712 (Published 25 September 2008) Cite this as: BMJ 2008;337:a1712
- Tim Dartington, associate1
- Correspondence to: E L Sampson
- Accepted 21 May 2008
My wife, Anna, trained and worked as a nurse, social worker, and psychotherapist in the NHS. Symptoms had been developing over three years and we thought that it was likely she had Alzheimer’s; after a series of other tests, this was confirmed by a brain biopsy in 2001. As she developed the signs of dementia and her professional life came to an end, I was learning all the time.
Throughout Anna’s illness I became temporarily disorientated and angry whenever there was a significant further loss of capacity for us to cope with. At first it was losing keys or puzzling over a diary entry; later it was physical aggression or double incontinence.
I had some experience of health systems from my work as a social scientist, including a study of agency collaboration around elderly mentally infirm people in the 1980s. As Anna became increasingly dependent, I experienced the roles of carer— “main carer” even—but I really had a less recognised role of informal care manager. I came to reject the designation of carer, doing what a husband or partner might do and asking primarily for services for my wife and not services “in support of the carer.”
Over the next six years of her illness’s progression, I argued on her behalf for consistency and continuity in the visits of the local authority’s home care team. I had the support of an Admiral nurse, who would discuss the possibility of residential care. I accepted this as likely, perhaps inevitable, not knowing exactly how the disease would progress, but I put forward as an organising principle that if possible Anna should not have to leave our home while she was still able to understand and recognise where she was.
Anna had severe visuospatial problems, so that simple tasks like climbing a step or picking up a glass became a challenge. She talked and laughed with friends and even in the late stages of dementia still recognised familiar voices, and impersonated the Queen’s speech at Christmas—but could not recognise the Christmas tree. She became unable to carry out any actions on her own, was disorientated and unable to follow any instructions, and in the end she was hardly able to communicate in an intelligible way. Her limbs were frequently in spasm, with involuntary movements. She was doubly incontinent. At times she would become agitated, and cry or hit out.
The social care was increased according to Anna’s increased dependency until there were four visits a day from the home care team, supported by up to four hours of informal carer visits, which I arranged.
Anna was eventually thought to meet the criteria for NHS continuing care, and the care management passed to the primary care trust. This decision made possible the care in Anna’s last nine months.
With the continuing advice of the social services care manager, we introduced a system of live-in care, while the existing care was maintained. The care in the family home was adapted to meet Anna’s increasing need: at first handrails, then ramps for a wheelchair, then a hospital bed, a hoist, a shower chair. Unlike residential care, the care could be highly specific to Anna’s needs. While she was still able to negotiate the stairs, she did so, however long it took.
This incremental approach meant that at this point the care exceeded ordinary expectations of what might be done at home. Each time the care was adjusted to accommodate a new crisis, the pressure to consider residential care or admission to hospital was reduced, until she was in the final stages of her illness.
On two successive Sundays, Anna seemed to be in distress, having difficulty breathing. The emergency services were quick and efficient. On the first occasion Anna was removed immediately to hospital, where the doctor in the emergency department proposed a series of investigative tests and was ready to admit Anna for observation. When he proposed inserting a catheter I was able to question the need for invasive treatment at this time, arguing successfully that continuing care at home was more appropriate. Otherwise she might well have died then in hospital—or lingered on—a delayed discharge statistic. On the second occasion I was able to argue at once against the emergency transfer to hospital, signing a disclaimer form for the paramedical services.
During the later stages of the illness there were frequent review meetings, at which the care plan could be revised. The review meeting after the hospital episodes was crucial. At the care manager’s suggestion, I drafted an advance care plan—after she explained what this was. It stated that the intention was to nurse Anna at home during the last stage of her illness. We made note of specific problems such as falls or pneumonia and the steps that would be taken to avoid emergency admission to hospital. The team had a new member: the palliative care consultant. She questioned me about my understanding of Anna’s wishes at this time and sought the agreement of the other professionals, including Anna’s general practitioner, to the implementation of this advance care plan.
It was not necessary again to call on the emergency services for Anna. Oxygen and back-up medication were stored at the house. The district nurse service was alerted and was on call from 8 am to midnight. (In fact they were called only once, during an evening.) The psychiatrist and the palliative care consultant and her team also visited the home.
Anna’s breathing continued to deteriorate and she had difficulty swallowing. Diazepam was given when she became agitated. Family and friends sat with her, feeding her while she was able to eat. I was with her at home when she finally stopped breathing.
Anna was a writer and, with the help of a psychologist, wrote about her own experiences of Alzheimer’s disease.
“My unfaithful brain left me slowly, but there were also a few exact moments that marked the start of its departure. These moments came up on me like the fox, very, very quietly. It was one thing to know in private that my brain had become unfaithful, but it was frightening to learn that its private betrayal had become publicly observable . . . it left me whilst playing scrabble with my family, and it left me when I needed it to guide my co-ordination as I walked through the world as an independent, energetic woman, with a successful career and a busy life.”
“The diagnosis of Alzheimer’s disease brought many changes into my life, and one of those changes was starting to have new professionals entering my life. I have entered into a system where I receive home care visits on a daily basis from a range of carers who provide assistance with a range of daily tasks. For me it is difficult to be put into this system of care, and it is one I didn’t really want to take part in. I have gone along with it, but it is not something I wanted. I wanted just to be left by myself, but with the Alzheimer’s disease some decisions have become no longer about my needs alone.”
On the future
“When I think about the future I think mostly about dying. In a way when I think about dying, it is as if it is just something that happens. The only thing to think about it is how it is going to happen, and all I can say that I want Tim to be with me and I want to be at home. Tim and I have sorted out as much as we can really. I am adamant that I want to die at home and not in hospital, in so much as that can be; there is no reason why that should not happen. I have a feeling that I will know that I am going to die before it happens. I have always expected that I would get quite a lot of headaches before something happens; that’s just because I feel it in me, nobody has told me that. This means that sometimes it is distressing if I am home alone and have a headache. Even though I know I am not close to dying, the headache triggers feelings of fear about dying alone. When this happens I feel an overwhelming sense of being alone and even of being abandoned.
“Between now and death there is the in-between, and whilst I am okay now, I do not know for how much longer. I plan to carry on and try to have as much fun as I can.”
Dartington A, Pratt R. My Unfaithful Brain—a journey into Alzheimer’s disease. In: Davenhill R, ed. Looking at later life, a psychoanalytic approach to depression and dementia in old age. London: Karnac, 2007:283-97.
The Admiral nurse’s perspective
Admiral nurses specialise in dementia care, with the specific remit of supporting “carers” of people with dementia. Tim rejected the title of carer, as do many families, feeling the term detracts from their relationship with the person they are caring for.
My initial focus was on supporting Tim in maintaining Anna’s independence. As Anna’s illness progressed my role changed to acknowledge Tim’s feelings of grief and anger; feelings that re-emerged at times when Anna’s needs increased or when the care package broke down. I worked with Tim to help channel his feelings into action.
A “person centered” approach was essential in meeting Anna’s care needs. The occupational therapist coordinated a series of sessions for the formal and informal carers which we co-facilitated. These took the form of supervision, education, and support to help the carers reflect on situations and share experiences. Working together as a team was crucial to providing effective support to Anna.
After Anna’s death, the Admiral Nurse Service continued to offer support to Tim.
Kate Coupe, Admiral nurse, Barnet, Enfield and Haringey Mental Health Trust, London N15 3TH
The occupational therapist’s perspective
Over the four years I knew Anna my role evolved: from occupational therapist to incorporation of the CPA (care programme approach) care coordinator and care manager roles. As an occupational therapist, I worked with Anna on her priorities, from finding practical solutions to personal care tasks through to sharing feelings related to having Alzheimer’s.
As Anna’s hold on herself and the world around her became more tenuous, the functioning of the complex care team became crucial. Connecting emotionally was inevitable: sadness, anger, doubts about competence and effectiveness, through to warmer feelings of concern abounded. Some of this could be understood as an unconscious communication from Anna about some of her experience of dementia. Members of the formal and informal network of carers needed support with these feelings too, if they were to be contained and cooperative working supported.
Longer term involvement meant I could act as a thread of continuity, keeping a hold of the many parts of a complex situation. This allowed for management of existing services and the timely introduction of new services as Anna’s needs changed.
Lynn Malloy, head occupational therapist, Barnet, Enfield and Haringey Mental Health Trust, London N15 3TH
The palliative care physician’s perspective
Anna’s wishes were well known and represented by Tim. She wanted to be cared for and to die at home. Her condition had deteriorated; she had experienced apnoeic attacks, which had frightened her carers, and she had narrowly avoided hospital admission. Carers needed confidence to manage her symptoms and permission not to call an ambulance.
An advance care plan was agreed at a case conference. Clear instructions were written and promulgated to all her carers explaining Anna’s wishes and what to do if she had breathing difficulties or a fit. Carers also had contact numbers for advice or support.
District nursing and palliative care input was increased. Anna’s GP prescribed oxygen and PRN (prescription required as needed) medication for symptoms that are common at the end of life, such as excess secretions. Out of hours services were informed of the plan.
Anna’s wishes were achieved by support for her carers and good communication between all involved with her care.
Mary Brennan, consultant in palliative care, North Middlesex University Hospital, London N18 1QX
The psychiatrist’s perspective
My initial contact with Anna and Tim involved monitoring her response to medication (donepezil and memantine). Unfortunately, she deteriorated rapidly and the focus shifted to managing her agitation and distress. Her function declined and even simple tasks such as climbing the stairs became impossible.
The support of the community mental health team and in particular her occupational therapist and care manger was vital. We made numerous applications to social services to increase and adapt her care package as her needs changed.
Anna lost the ability to speak and express her wishes, but these changes had been discussed at an earlier stage. She became bedbound and then developed apnoeic episodes. At this stage we shifted focus towards avoiding acute hospital admission and fulfilling her wishes to die at home. We drafted an advance care plan—a new experience for an old age psychiatrist—and the involvement of the palliative care team was instrumental in supporting this.
Elizabeth L Sampson, senior lecturer and honorary consultant in old age psychiatry, Royal Free and University College Medical School, London NW3 2PF
Sources of further information and support
For Dementia (www.fordementia.org.uk) promotes and develops Admiral nursing, a specialist nursing intervention focused on meeting the needs of carers and supporters of people with dementia
Admiral Nursing DIRECT (tel: 0845 257 9406) offers telephone or email advice and support for family carers, people with dementia, and professionals
The Alzheimer’s Society (www.alzheimers.org.uk; tel: 0845 300 0336) works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland
Marie Curie Cancer Care (www.mariecurie.org.uk; tel: 020 7599 7777) provides high quality nursing, totally free, to give people with terminal cancer and other illnesses the choice of dying at home, supported by their families.
Cite this as: BMJ 2008;337:a1712
This is one of a series of occasional articles by patients about their experience of traumatic medical events that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley () for guidance.
This article is the culmination of a long term relationship between Anna, Tim and the clinical team; we all collaborated in writing this article. We thank Karen Harrison for her helpful comments on the manuscript.
Competing interests: None declared.
Provenance and peer review: Not commissioned; not externally peer reviewed.