The excellent article about dementia in prisons, in last months Inside Time, was of special interest to me. For five years I have worked as a coordinator delivering age-appropriate and meaningful activities for individuals with dementia.
The disease is close to my heart because in 2014 my great-uncle succumbed to the disease after complications brought on by Lewy body dementia. Prisoners with dementia are a topic I think about a lot. But on the flip side, I have met a number of family members with dementia who have a loved one serving time in prison. In 2014 I supported a lady with Alzheimer’s. Her daughter was and still is serving a lengthy prison sentence. Ann (although this is not her real name) did visit her daughter. It was difficult because the prison officers didn’t understand her sudden outbursts or choice of language sometimes.
Dementia can force people into self-consciousness in which they are unable to act in a relaxed and natural way. It is one of the many undignified symptoms of this ghastly illness. Ann’s husband didn’t want to make a fuss during visits so they sat in the visiting hall with the rest of the prisoners and their families. Ann has a large family but since she was diagnosed with dementia, children crying or screaming distressed her. She also enjoyed an active social life and sang in pubs and clubs. But dementia doesn’t like noisy environments so Ann would often feel unsettled and would bang the table. She had been a calm and placid individual throughout her life but dementia caused her to present challenging behaviour sometimes.
I practice a one-to-one person centred approach and I find out as much as I possibly can about a person I support with dementia. I compile life story work for support workers and other professionals which helps them greatly to get to know the individual in their care. Ann had a life story book but her husband informed me that he wasn’t allowed to take this in on a visit. I couldn’t understand why because over the years I have witnessed hundreds of Dads reading books to their children on visits. It promotes interaction and maintains the bond between father and child/mother and child.
Prisoner’s families’ charities and organisations passionately campaign about the benefits of maintaining family ties. But, what about Ann? One afternoon during a prison visit, Ann looked at her daughter and said, “Who’s that”? Her daughter returned back to her cell devastated.
Her health deteriorated and she never went to see her daughter again. But she knew she had a daughter. You see, her life story book jogged Ann’s precious memories and photographs brought a sparkle back into her eyes. She had a daughter who was three years of age. Not 28. She even remembered her name and asked where she was. Meanwhile Ann’s daughter was sat cooped up in a cell with the impression that her mother had forgotten her.
Flipping the coin back again, prisoners with dementia may experience exactly the same. When I first started working on a dementia unit; I thought I would be supporting elderly people – wrong! Ladies and gentlemen between the ages of 40-60 with Alzheimer’s/dementia stayed for respite. Some had drugs and alcohol induced dementia (Korsakoff Syndrome). When I first started supporting people with dementia, I was unaware of the many symptoms that came with it.
One gentleman who carried a picture of his wife repeatedly asked me where she was. Each time I told him softly that she had passed away. Little did I know that every time I answered his question, he would grieve over and over like it was the first time someone had told him his wife had gone. Cruel? Yes but certainly not intentional which is why I enrolled on training and
dementia awareness courses. I specialise now in reminiscence and life story work.
The prison estate needs to be more understanding not just with prisoners with dementia, but those with the disease visiting their loved ones also. This of course will come down to extra bodies and funding. If Ann had the opportunity to reminisce with her daughter with life story work in a quiet environment, perhaps her daughter would now have the peace of mind that her mother knew she absolutely existed; even if her existence was that of a three year old little girl once upon a time.
Alison Henderson is an expert by experience