Cycling with dementia

[thirdcrank]

... But maybe you should take some comfort from the fact that he is still active, doing something he enjoys, and he seems to continue his social life that is possible with a bike. ...

I think this goes to the heart of it. He faces imminent reductions in his independence and while that may make him somehow safer, it will do nothing for his happiness and general well-being. I went through something a bit like this with my late mother although, fortunately, she only ever went roaming once and immediately approached somebody - a true goody - who took her back into her flat, saw my name on the speed dial and rang me. So, I never needed tracking devices. My efforts were directed to things like TV remotes (and phones with speed dial buttons.).

She remained physically fit and independent to age 94 and died after a few months in a home. It's a cliché but you are doing what he would have wanted, had he known in the past how this would develop. All sorts may "go wrong" as this gets worse but IMO you are right to try to maintain this rider's independence for as long as possible and I hope somebody comes up with the goods re the tracker.

[Psamathe]

I suspect a lot depends on the nature of the individual and their dementia. My own experience (with my father who has had vascular dementia for quite some time but not a cyclist) is that when he has something "new" he has a tendency to keep picking it up wondering what it is and putting it down (often somewhere else). In the 1st few months after we got an emergency helpline with radio button setup he'd regularly pick up the button, wonder what it was and press it before putting it down. Often if he decides that whatever it is is not his he will try and put it somewhere else or even throw it away.

But I suspect a lot depends on the individual and the progression of the dementia. I have known of other sufferers who have a tendency to "go for a walk" (maybe to find something or somebody) and get hopelessly lost where in some respects we are "fortunate" in that my Dad have never shown the "wander off" tendency and is happy to sit at home.

I have no idea about your friend and so much must depend on so many factors. But I would make sure you are aware of the risks of him carrying something he does not think of as his, wonder what it is and discard it. It's certainly not a stopping point though. A few tests (maybe rides with somebody else with him carrying a tracker).

Not used it myself but iPhones (and I'd suspect Android) have built in tracker system (I've disabled mine as I think it's a bit "creepy").

As you identified, challenges keeping it charged, making sure it is picked-up when he departs. Does he have care present when he departs who can ensure it's taken and then put on charge on his return? Care seems to vary enormously and when my parents had "visiting care" I'd trust some but others were pretty unreliable.

Also consider the emotional impact on him when he gets lost. My own Dad is quite bad but is still aware of his problems and when he "gets things wrong" it really upsets him and the upset stays for quite a long time.

Good luck and definitely worth the effort to find a solution and keep him cycling.

Ian

[Bonefishblues]

You can get pet trackers. These are basically a mobile phone with GPS capability that can send an SMS when you need their position. They also have the capability to Geofence (set an alarm boundary).

You can also get bidirectional lights that mount on a helmet. Maybe there is even one that turns on automatically when the light is bad.

You are going to tell me that he will not wear a helmet next I guess. These things can be very tricky when dementia folks will not allow help. My mother kept driving and we did everything we could to move her into a town.

I was going to suggest these. Small and discreet. We have a Pod 3, which would be easy to attach to frame, forks or bars.

[Cyril Haearn]

Some old people have big houses, young people need somewhere to live, maybe you could find someone to accompany him, the young person would profit from that, grow and learn
For cycling, I would try a tandem

[geocycle]

You can get pet trackers. These are basically a mobile phone with GPS capability that can send an SMS when you need their position. They also have the capability to Geofence (set an alarm boundary).

You can also get bidirectional lights that mount on a helmet. Maybe there is even one that turns on automatically when the light is bad.

You are going to tell me that he will not wear a helmet next I guess. These things can be very tricky when dementia folks will not allow help. My mother kept driving and we did everything we could to move her into a town.

I was going to suggest these. Small and discreet. We have a Pod 3, which would be easy to attach to frame, forks or bars.

We used one of these http://www.trackyour.co.uk/index.php/tracker-types for my mother. It saved the day on a number of occasions although there is a lot more choice these days that may be better. You can set up a geofence and could find a point on a map as long as there was mobile coverage. It also allowed you to listen in which could be helpful in deciding whether there was a problem. I think I'd suggest something like this that they will keep with them all the time rather than focusing on the cycling. If they get lost cycling then at some point they could also get lost walking. Perhaps a key ring would be a discrete option?

[[XAP]Bob]

In terms of a bike specific tracker then the velocity with a dynamo is, however 'un-racey', a good way to go.

The alternative is a general tracker - but they suffer from the same requirements of being charged and worn.

[AlexK]

The safest way is for them not to go alone.

Unfortunately the only option to achieve this is to take the bike away, even then he would walk long distances.

When the bike was being repaired following the accident, he walked. This included walking, to visit another friend, along a busy main road which has no footpaths, an 8 mile round trip. I got told off for allowing this to happen.

As my friend lives alone I can't stop him or reason with him.

[AlexK]

In terms of a bike specific tracker then the velocity with a dynamo is, however 'un-racey', a good way to go.
.

We might be making some progress. He's starting to accept that the needs lights on the bike. Though some friends have voiced concern that this might give him a false sense of confidence so that he will start riding at night.

If he does continue to accept this it opens up the dynamo hub route with a velocity.

So I'll have a chat with my local bike shop to see if they can recommend a hub and if they're aware of any issues with the hub running the velocity and lights.

In the latest issue of Everyday Practical Electronics there's a project about powering lights and mobile phones from a hub. I wouldn't build a project, but it gives me the questions to ask a supplier of hubs, lights and Velocity.

[thirdcrank]

I don't know how much you know about bikes, so forgive me if I'm telling you something you already knew, but there are modern hub dynamos which have a slick appearance. They are not undetectable, but they fit in with lightweight kit in a way that makes them attractive to use. It would mean having one built into the front wheel but otherwise, it's largely fit-and-forget. Also, AIUI, drag is greatly reduced so they don't make riding a lot harder. There are also some slick modern dynamo lights which don't detract from the appearance of a bike.

Some of us are from a generation who had the choice for lightweight bikes between unreliable (N)ever Ready battary lamps and inefficient dynamos. Your friend may be one of us, so to speak and as memory recedes, those earlier experiences may be remembered.

Since my mother died, I've reflected on how her dementia developed and one very clear point is that things were worse at each stage than I realised, partly through my trying to be optimistic, partly through strategies she used. It seems to me that your choices are between restricting your friend or trying to prolong his period of independence. Dementia is progressive and unpredictable. You can only act for now, rather than trying to predict when things stop your friend riding.

[Psamathe]

One thing I have noticed with my Dad (quite bad with dementia now) is that he really wants (and tries) to do things he absolutely can't and are dangerous/ludicrous for him to undertake. I believe the reason he wants to do these things is because he does not want to feel incapable or for others to think he is incapable. He is aware of his issues and it upsets him badly. Might be an idea to try and phrase changes in a positive light rather than e.g. "as a safety measure" or as something he needs to be convinced about.

Most things Dad is told get forgotten within 3 minutes. But the occasional thing he picks-up you'd rather he forgot will stick for weeks and stay the focus of attention. So something "imposed" or against his will/wishes might be remembered and resisted for a long time.

But everybody is different (different characters, different stages, etc.)

Ian

[geocycle]

Since my mother died, I've reflected on how her dementia developed and one very clear point is that things were worse at each stage than I realised, partly through my trying to be optimistic, partly through strategies she used. It seems to me that your choices are between restricting your friend or trying to prolong his period of independence. Dementia is progressive and unpredictable. You can only act for now, rather than trying to predict when things stop your friend riding.

Yes that was my experience. If you only deal with the current situation you have to accept the solution will soon be overtaken by events. However, I agree that you can only act for things as currently presented although where there are alternatives go for the one that might help longest even if it seems OTT now. Things like technology can buy some time but at some unpredictable point support will be needed.

[[XAP]Bob]

In terms of a bike specific tracker then the velocity with a dynamo is, however 'un-racey', a good way to go.
.

We might be making some progress. He's starting to accept that the needs lights on the bike. Though some friends have voiced concern that this might give him a false sense of confidence so that he will start riding at night.

If he does continue to accept this it opens up the dynamo hub route with a velocity.

So I'll have a chat with my local bike shop to see if they can recommend a hub and if they're aware of any issues with the hub running the velocity and lights.

In the latest issue of Everyday Practical Electronics there's a project about powering lights and mobile phones from a hub. I wouldn't build a project, but it gives me the questions to ask a supplier of hubs, lights and Velocity.

Go racey-ish with an SP-V hub (If that's the right name, my brain is mush) for better acceptance.
There would be no issue with both being run from the hub.

[thirdcrank]

Just on the matter of the OP's friend having his own high standards for what a bike looks like, I needed to replace one of my mother's chairs when she had difficulty getting up from an old one which had sagged. I got advice from the excellent William Merrit Centre here in Leeds (mobility, rather than dementia) and they explained the criteria for a chair. We took my mother to one the local showroom of the nationally advertised high seat chair companies nearby and from hundreds of swatches of fabrics, she picked one in seconds. It turned out that this was the most widely picked fabric in their extensive range. My mother had worked in paint and wallpaper retailing most of her working life and knew how to match colour. All I'm trying to say is that just because somebody's memory has largely gone, it doesn't mean they lose all their talents.


https://www.wmdlc.org/

[AlexK]

My original question was

We would like to put a GPS tracker on his bike so that we can monitor his position if he's reported missing by his carers. He is likely to agree to this.

We've not progressed very far on this over the months.It didn't have the impetus as it appeared my friend stopped cycling. However, over the Christmas break he started again possibly because friends contacted him to wish him well so he got on his bike to pay them a visit.

Unfortunately it's now winter and he rides without lights. He has the view that racing bikes don't have lights. He was bought a set of lights but they're of the type with the silicon strap and he just removes them by unclipping the strap.

Anyway, he was stopped by the police one evening it was dark he had no lights on the bike. He was told off and driven home in a police van.

Can anyone suggest any lights that can be permanently fixed to the bike, that are simple to use ( the user has dementia), has only one low power mode, thus minimizing battery usage and are rechargeable with the recharging point accessible when the light attached to the bike.

I've looked online at Wiggle, Evans and Halfords and none of them seem to flaunt any of our above requirements.

[alexnharvey]

The safest way is for them not to go alone.

Unfortunately the only option to achieve this is to take the bike away, even then he would walk long distances.

When the bike was being repaired following the accident, he walked. This included walking, to visit another friend, along a busy main road which has no footpaths, an 8 mile round trip. I got told off for allowing this to happen.

As my friend lives alone I can't stop him or reason with him.

Told off by whom? A professional who should know better or a well meaning person who hadn't thought it through? (although the two are not mutually exclusive)

'Wandering' in dementia is very difficult to manage even in situations where a partner remains alive and cohabiting.

https://www.alz.org/help-support/caregi ... /wandering

Sorry, I had not read your up-date. Not a cheap solution but a hub dynamo and bolted on lights might be best. My rear light (spanninga Elips) doesn't even have an off button. As you have found most battery lights are designed to be easily removable so they can be recharged, and require that they are switched on at the outset which your friend might forget or choose not to do.

Does anyone have power of attorney on financial affairs or a guardianship? Does your friend still have mental capacity (in the technical/clinical sense under the Mental Capacity Act)?