Carolyn French’s story of her partner’s battle with dementia

Carolyn French recounts the decline of her partner after the onset of dementia and the difficulties in accessing effective support until she discovered the care programme approach

The changes in my partner David’s behaviour did not occur suddenly. His symptoms started in 2004, when he was 65. For six months he was aware that he was forgetting words, but he was able to cover for this. But I became aware of his irritability and clearly depressed state. Then he began to behave erratically. One day I came home to find the house strewn with his possessions as he was going through them. His agitation was made worse if I asked him what was wrong.

There followed six months of tests ordered by the GP but with no diagnosis.

The only way to see a geriatrician was to pay privately. We were told there was some evidence of small vessel deterioration to his brain cells. The geriatrician did not use the word dementia. I was still unclear but hopeful when he was prescribed statins and aspirins.

That second year, I continued to work and we managed between us. But the statins were not working.

I paid to see a neurologist privately, who immediately suggested an MRI scan. This cost £600. The neurologist told us that the diagnosis was cerebral vascular dementia.

I cared for David for the next year. But by the end of the year I needed help as he became doubly incontinent.

Social services were sympathetic but we were not eligible for their help. I turned to the GP practice. It took a week for the incontinence nurse to visit. She handed me a catalogue and told me I could order pads myself, leaving me in my soaking house.

I privately employed an Age Concern care worker to help me twice a day. But she suddenly left the service and could not be replaced.

Now David was hallucinating. At nights, he would tell me to get out, believing I was a stranger, and by this time he had begun to hit me very hard.

I turned to another agency, but David was hurting the carers and they left. I turned to the day centre. But because he became agitated they told me he was not suitable. I then took him to a private home specialising in advanced dementia. They told me he could present a risk to others and turned us away.

Finally I called the police. They were confronted by an angry man covered in faeces and ordered him into the bathroom. The police were about to leave when I left the house and told them they were in charge of a vulnerable adult. They called the approved social worker and within an hour the doctors and ASW arrived. My partner was sectioned and I went with him to the dementia unit.

I saw how the nurses managed the aggression at changing times. This was all I needed to know and two days later I took David home. Now the situation changed entirely. Under the care programme approach (the care management system for people using specialist mental health services) I now had the support of a community psychiatric nurse, a care manager and a psychiatrist. The support was constant, immediate and a brilliant example of person-centred care. David was treated with respect. He could recognise this and would shake the hands of the psychiatrist when he visited.

In the last phase he became too weak to fight back. He was unable to move, speak or swallow as all his bodily functions closed down.

There can be nothing more frightening than being pulled into an ambulance when you don’t understand why and you are choking to death. No one comforted him or me in hospital. David was transferred to a ward but the noise and chaos terrified him. I asked for him to be moved to the hospice where he died.

We need to have rapid diagnoses with dementia. Surely an MRI scan should be among the first tests when a person is forgetting words and their speech is affected.

There should be immediate support and advice available to any carer. In my case I needed support with how to handle aggression and incontinence and where to access equipment when crises occurred.

Care staff are afforded no status or adequate incomes, resulting in huge turnover and unreliable services. Agencies must be funded properly, while nurses and hospital workers must be taught person-centred care.

The key to my experience was the care programme approach. Although it may seem expensive, it is much less than the cost of staying in hospital or institutionalisation, which is what happens when carers are not given support.

➔ More on Community Care‘s dementia campaign

CAROLYN FRENCH BIOGRAPHY

Carolyn French is practice learning co-ordinator for social work at Greenwich University. She previously worked mainly in adult social work, in London and Jamaica, and has four years’ experience as an approved social worker. She has a PhD in social research.

This article is published in the 29 April 2010 edition of Community Care under the headline “With dementia we need a rapid response”