Living with dementia magazine December 2012/January 2013

The risk of someone with dementia going missing can be hard to deal with. Danny Ratnaike finds out about a scheme that uses a network of local volunteers to help.

It can be extremely worrying if a loved one with dementia goes missing. If they might be at risk then contacting the local police straight away is the right thing to do, though some carers don't feel comfortable doing this or aren’t sure when they should.

Neighbourhood Return is a new free scheme in Oxfordshire that allows carers to tap into a network of local volunteers to help find a missing person with dementia prior to any police search.

Out every day

Roger Stammers' wife Isobel was 61 when he first noticed her symptoms of dementia. It took four years to convince her to go to a doctor and longer to be diagnosed.

Initially given donepezil (Aricept), she was prescribed an antidepressant instead after a diagnosis of fronto-temporal dementia. A later blood flow scan led to her being diagnosed with Alzheimer's as well and she was prescribed donepezil again.

Roger says that Isobel first started to walk off on her own after she was taken off donepezil.

'She stopped when she was prescribed it the second time, but started again later on and this became quite difficult.

'I took her out every day. In the morning we'd go looking in shops, walk around local villages and have a pub lunch. But as soon as we were home she’d forget and would want to go out again.

'At first I wasn't worried. She would walk around locally and come back herself, or sometimes she’d go to a neighbour's and they would bring her back.'

Missing

This changed two years ago when Isobel didn't return home as usual.

'I thought she must have walked off into town so I went to try to find her, which of course I couldn’t on my own.'

Roger checked back home after an hour and stayed there another hour, phoning neighbours, before going into town to search again. Fortunately Isobel was there the second time he returned home after a further hour.

'I was baffled about how she had got back and she couldn't tell me. Later I found a bus ticket in her bag, but according to the time on the ticket she’d got the bus back only an hour after going missing. I don't know where she was between then and being at home.

'That experience really shook me. I kept thinking that she could have got on another bus to somewhere else. How on earth could I ever have found her?

'My solution after that was never to let her out of my sight. If she wanted to go out, I went with her. Sometimes she'd be hostile but I would still go along.'

A tracking device was suggested but Roger didn't think this would be practical for them.

The situation worsened as Isobel's dementia progressed and although Roger had invaluable weekly support from YoungDementia UK, a local charity, Isobel had to move into a care home a year ago.

Neighbourhood Return

Roger heard about Neighbourhood Return from Dr Rupert McShane, a consultant psychiatrist at the local mental health trust who developed the idea with Thames Valley Police and Neighbourhood Watch.

Roger became involved on the scheme's steering group.

'There's nothing worse than if your loved one's gone missing and you don’t know what is going on or who might be taking advantage of them. Neighbourhood Return would have let me cope a lot better.'

People with dementia and carers pre-register so that if the person ever goes missing the carer calls a number and a search can be started in three to five minutes.

Service Manager Deborah Ginns says,

'We inform the police when someone goes missing. Unless it's high risk – say if it's very cold and the person is only wearing light clothes – we manage the search in the first instance for two and a half hours. Otherwise the police lead the search, though this could also involve our volunteers.'

Registering is a detailed process that includes questions about previous homes or workplaces the person is likely to return to. The information is confidential and only necessary details are given to volunteers involved in the search, such as what to call them and their appearance.

Deborah says,

'Unless a carer asks, we won't give their address out to volunteers. The volunteer who finds the missing person will wait with them until either the carer or the police arrive to take them home.'

When they sign up, volunteers receive advice about searching and how to approach a person with dementia who may be confused and upset.

Real difference

Linda Barnes, Alzheimer's Society Locality Manager, welcomes the scheme as resonating with work to build dementia friendly communities.

'It makes a real difference for carers to know there’s someone to call if a person with dementia goes missing. It will be good to see how it develops.'

After testing in Deddington, Oxfordshire, the scheme was launched throughout the county in November. There are plans to cover Northamptonshire and an area of East London in 2013, and funding is being sought to roll it out further afield.

Deborah says people should register no matter what stage of their dementia journey.

'They'll be sent a fridge magnet with the number to call if the person does go missing, but the registration is a one-off thing and they can forget about it unless they actually need the service.'

See the Alzheimer's Society factsheet Moving and walking about (501), and to order a copy call 01628 529240 or email alzheimers@xcalibrefs.co.uk

For more details about Neighbourhood Return and to register see their website. The scheme hopes to secure funding to extend to other areas and you can register your interest even if your area isn't covered at the moment.

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