Living with dementia magazine October 2010

Former carer Elizabeth Smith had to involve the police in searching for her late husband on more than one occasion when he went missing. Her family has since helped Leicester police develop information packs for other families in case of emergency.

When Elizabeth Smith's late husband, John, went missing in Leicester in December last year, she convinced herself that something terrible had happened. It was late afternoon on 30 December when Elizabeth had returned home from volunteering at a charity shop to find her husband, who had Alzheimer's disease, missing.

In the latter stages of John's dementia, he had a tendency to want to leave the house at night. This caused problems for Elizabeth, who worried about what might happen to him if she let him go.

Last December was the third time the family had to call Leicester police to look for John, and this search was the most extensive. Dog patrols, the police helicopter, and forces from divisions across the country were called out. Elizabeth had convinced herself John, who had been missing for more than ten hours, would be in the canal. Fortunately, he was found walking on an industrial estate on the east of the city.

Locking the door

After the incident, Elizabeth concluded she had no option but to lock John in the house. She said,

'It made me realise that he could never be left on his own. Until the last six months of his life it had been okay to leave him. He used to go for long walks when he retired and would be out for a long time, but I wasn't dreadfully concerned because I knew where he was going.

'But it got to the stage when he started getting restless when it was dark, and say that he wanted to go home and go to bed. I couldn't reason with him. He wouldn't accept this was his home, and we've lived here for more than 50 years.

'He'd say, 'I hate this place. I'm going home.' He wanted to get back to his childhood home. That's where he tried to go every time.

'After he went missing in December, I wouldn't let him out of my sight, but the problem got worse and worse. I flatly refused to open the front door and I had to lock the door and hide the front door key.

'I felt very guilty about that and I was frightened because he'd get aggressive. There were times when I almost felt like opening the door and letting him go, but it was always around midnight so I couldn't do it. There was no answer to the problem.'

John sadly died in April this year. Since the incident in December, Elizabeth has kept in touch with Leicester police and has contributed to their work on developing information aimed at families caring for people with dementia.

Police resources

Inspector Colin Hope is a search adviser for Leicester police. He was called out on the night John went missing. Inspector Hope says,

'Two things occurred to me after that event. We had three groups of officers asking the same questions of Mrs Smith at different stages of the search.

'Elizabeth was being asked 101 questions when she was in a distressed state, and what would have been useful was some simple information she could have had ready to give to us. I felt there was a gap in the advice needed for people in Elizabeth's situation, and for officers about what to do in this situation.'

Leicester police contacted the Society's office in the city to seek advice, and has since produced two resources. One is an emergency pack aimed at families of people with dementia. The idea is to include key information about the person in the pack in the event they go missing.

It may include a recent photograph, a description of the person, a list of people they might contact, and places they may go to, such as old family homes, workplaces or beauty spots. It also includes tips on risk prevention.

The second resource is aimed at police officers dealing with missing people with dementia.

Tips for carers

The Society's factsheet, Moving and walking about (501), explains why people with dementia may walk about. Reasons may include relieving boredom, using up energy, or believing they live at a previous address. Once you identify what the person is trying to achieve, it is possible to find ways to meet their needs, thus reducing frustration and helping to retain independence.

It also has tips for people who struggle to decide whether to prevent the person leaving the house, and how to limit risks.

For a free copy, call Xcalibre on 01628 529249 or read the factsheet here