There is so much more we can do to look out for those with dementia when they feel lost

Irene says it's now time for action when it comes to better supporting people living with dementia.

As the nights become darker and the weather becomes really wintery, I can’t help but think of the case of Janet MacKay. Janet was an 88 year old lady with dementia from Knightswood, Glasgow, who went missing just over two years ago. Sadly Janet was found dead in Clydebank where she lived in her younger years some eight days after she disappeared.

It’s hard to imagine the nightmare that Janet’s family must have gone through during the time she was missing.  It’s equally hard to imagine over those eight days how lonely and confused Janet herself must have been. It appears from CCTV that Janet got on and off at least one bus, went in and out of shops and remained lost and alone for all that time.

Janet’s case is a tragedy of epic proportions and really made me think about how as a society we respond to such difficult situations. Are we to risk averse? Do we not want to interfere?

I remember a member of the Scottish Dementia Working Group describing to me finding himself in the city centre in Glasgow and panicking because he couldn’t remember how to get home. He told me that he sat in on a bench George Square until the “fog ” that he felt was around his head lifted. He’s not sure how long that took – it could have been hours he said.  He didn’t feel able to speak to someone or ask for help. Are there lessons that we can learn and solutions we can find to help people with dementia when they feel lost or should we just expect them to stay home?

Personally I can think of nothing worse than being cooped up and not allowed out.

There are potential digital solutions that could provide something of a safety net. Adapted mobile phones are used by some people with dementia but if you forget to take your phone or lose it while you’re out then you’re back to square one.

At a solutions lab that I attended on innovation and dementia someone with dementia himself said he would be happy to be micro chipped, because it would keep him safe and give a sense of comfort to his family who constantly worried about him. He’d rather do that than be confined to the house all day.

While clearly digital has a role to play, could we do more as individuals to be alert to someone lost or in distress?

The “commitment” in the new National Dementia Strategy (this link will take you away from our website) to “consider” Police Scotland’s findings on Missing Persons is too weak.  While The Police were severely criticised in the Janet MacKay case for 17 failings in relation to inappropriately handling the investigation some debate and discussion on how as a society we ensure the protection of vulnerable adults and hold organisation’s like Police Scotland to account is a much wider issue.  How do we raise awareness? What are the range of digital options and when someone is reported missing how can we be confident in the Police and community response?

We can’t just leave this to a set of new guidance and chance.

It strikes me that if this tragedy had been about a child – society would rightly be outraged and we would have seen more than just “consideration of the issues” by now.

Vulnerable older people and those who are mentally frail deserve better than a vague commitment. It’s time to act.

Have you ever had experience of your loved one getting lost or going a missing?

How do you feel about digital solutions? As a society are we too risk averse and frightened to interfere?

I’d love to hear your views and experiences.

Dr James McKillop, ALLIANCE Involvement Network and Dementia Alumni Group member, had these thoughts he wanted to add after reflecting on the above:

“I personally knew an old lady, who disappeared and was found a week later, either in the River Clyde, or by the banks.

I personally experienced being lost several times.

In the car. I was driving along a road I had travelled for 6 years at high school, and 9 years for work, then weekly to visit my mother. I suddenly did not know where I was, what I was doing, or where I was going.  So I drew in and waited. I was terrified. What was the matter with me, where was I headed?

So I decided to have a nap and when I woke, things were clearer. I was near my mother’s, going to visit her.  A large building on the left when I was younger had been demolished and I must have been thinking back to those times, and consequently my bearing had gone. Does tiredness or physical discomfort, make one more liable to experience “feeling” lost?

What is lost anyway? Finding yourself somewhere that is strange to you, or being somewhere familiar and not being able to appreciate where you are, and feeling you are lost?

If someone has dementia, any change, even slight, in their eye view, can cause disorientation. This can be a tree blown down, wrapping or scaffolding round a building, a new building or a building knocked down, a new traffic alteration or something like an advertisement hoarding being altered. Or even something as friendly looking as snow. The landscape has changed dramatically.

The bus. I have my regular bus trips alone, within my comfort zone. I do not travel outside it, unless I have a supporter. As I walk to the bus stop 5 minutes away from my house, I keep repeating my destination to myself.  Yet at times I can get on the bus, face the driver and not know my destination. I find it is safer to say something innocuous like “town please”. As the bus proceeds along the road and familiar objects pass by, I usually come to and determine where I am headed. However at night, during a snow fall or wet weather, I cannot recognize where I am. Instead of daylight, everything is coated with an orange paint.  I have been known to get off at the wrong stop, or go past my stop. Ergo, I do not venture out at night, unless in my wife’s car. Even then I am uncomfortable, as  everything looks so strange. Once I got on the bus and they had changed the colour of the seating. This confused me and I had to sit down, look out the window to see if I was heading home, or going into town.

It can be easier going to town as you can just say “town” and get off where you like. However returning home can sometime be a nightmare. Quite a few times I get on a bus, everything goes blank and with the driver looking impatiently at me (after all he has a schedule to keep) and I admit I forget where I am going. Normally they just issue me with a ticket (to where I never look) and I sit down and watch the route to see if I am headed West or East, then I can usually orientate myself.

I am wary of large department stores. I have seen myself going into one via the main door, and when exiting, I can follow a sign and go out by another of several doors. Naturally everything looks strange and I don’t know where I am. I panic and wonder if I have taken a stroke or something and came round and ended up in London, Birmingham or Manchester. I have read a few fiction books where this happens, you come around in a strange city. Did aliens abduct me then dump me carelessly?

I have been going to the same doctor’s surgery for forty years. I have seen myself walking along the street and forgetting where to turn off, yet I am so near. I usually show someone my Helpcard and ask for directions. Once I near the building, my memory floods back.

Have I tips for trying to prevent being lost? I think each person will have their own.

Do not go out alone if you are tired, or if fresh, stay out too long, especially if the weather is foul.

Carry your address with you, but only show it to officials to avoid being scammed. The Helpcard has phone numbers of who to contact, and again only show to officials or shopkeepers.

If you are walking along and suddenly feel lost, stop immediately. Turn in a circle to see if you recognize anything. If not, return the way you came and see if you can recognize anything from where you have been and re-orientate yourself. If nothing happens within 50 yards, seek help in a shop, or approach an official person.

Hopefully if you are near a tea/coffee shop you can go in for a refreshment and a bun, and see if any memory returns.  If not ask the assistant for help. This could be directions to a taxi rank, bus stop etc, or to phone someone in your Helpcard and ask the assistant to tell them where you are.

Always carry something like a £20 note, not for spending, but to keep it safe, for a taxi if need be.

A mobile phone can be handy to hear a familiar voice, and to let someone know where you seem to be.

There are also various pieces of technology, such as trackers, for people to locate you.”

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