Dying from dementia—a patient’s journey

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 …