Lack of services and support for individuals with early onset dementia

By Blair McPherson

I was the first specialist dementia social worker in Birmingham. I was part of a social work team for older people, so I was surprised when I received a referral for a woman in her mid to late 40s. She had originally been referred to the mental health team but when a diagnosis of early onset dementia was confirmed the psychiatric services said they could do nothing for her as she did not have a mental illness.

My team manager was not the type to argue about whether someone met the referral criteria and this was a special case, not because of the age of the individual, but because up until a few months ago she had been a social worker based in the local hospital.

Erratic driving

There was a real risk that this individual would fall between the gaps in services but one of her former colleagues in the hospital social work team was determined this would not happen. She explained that her colleague had worked in the hospital social work team since qualifying, she was popular and well respected by the medical staff. At first her forgetfulness was treated as a bit of a joke as was her rather erratic driving. In fact, it was her driving that signalled something was wrong. She stopped driving, came to work on the bus and volunteered for a lot of office/ward-based duty work. If a home visit was required she got a lift with the occupational therapist.

Colleagues began to suspect she had a drink problem. So the eventual diagnosis was in a way a bit of a relief until further deterioration made clear the full implication. She had hidden the true extent of her short-term memory loss by making lists and reminder notes. It is not uncommon for someone with a high IQ before the onset of illness to initially be able to find ways of compensating for their short-term memory loss.

While on extended sick leave, her former colleagues kept in touch. But she stopped answering the phone. Once the diagnosis was confirmed she retired on the grounds of ill health. At the time I became involved former colleagues were concerned because they could not find her in when they called round and neighbours reported that she was keeping “odd” hours.

Piles of clothes

She lived near my office so I took to calling round on my way to work, at lunch time and on my way home. It was on my fourth or fifth call that I finally met her. She came walking down the path as I was stood at her front door. She was carrying two full supermarket bags of what I assumed was food shopping. She looked much older than her years, her hair was unkempt and her clothes looked like she had slept in them. She had.

I discovered that for reasons she could not explain, she slept in an armchair and rarely went upstairs. Downstairs was untidy, it looked like someone had emptied all the cupboards and drawers looking for something, which in fact she had. There were piles of clothes on the chairs and tables. Upstairs, however, was neat and tidy if unused. She made me a cup of tea and told me that she used to be a social worker, thanked me for my concern but assured me she was perfectly capable of managing on her own. It was a modern semi with central heating on a timer so despite the cold weather the house was warm.

No support groups

At the time this was the first case of early onset dementia I had come across. I had access to specialist day care, respite care and home care but these were for older people; most of my clients were 80+. There were no support groups for people with early onset dementia and a ring round the other specialist teams in my large local authority revealed no other active cases. The trouble was neither the mental health teams nor the older people teams were collating information on early onset dementia cases. I tried to set up some specialist home care, there were some concerns about personal hygiene, diet and alcohol consumption,  but it didn’t work and the care worker kept reporting that the client was out when she called.

The deterioration was swift and within six months she had declined physically and was admitted to a nursing home. This was almost 30 years ago but I thought of it today as I watched an interview on breakfast TV of a woman with early onset dementia in Liverpool. It appears that the health service there has recognised the problem and set up some specialist services. So maybe things have improved.

Blair McPherson is an author and blogger on the public sector www.blairmcpherson.co.uk