Cycling with dementia

General cycling advice ( NOT technical ! )
AlexK
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Joined: 27 Sep 2018, 12:16pm

Cycling with dementia

Postby AlexK » 27 Sep 2018, 12:29pm

Hi

I have a friend who has been a keen cyclist all his life and is still physically fit, uses a road racing bike.

Unfortunately he now has dementia. There have been two occasions recently when he's been out on the bike and got hopelessly lost. On both occasions we knew where he supposed to be going and it was a route he's taken many times before.

On the first occasion we drove the route and found him at a road junction looking absolutely confused.

On the second occasion we didn't find him as he'd cycled in completely the opposite direction. Ten hours after he'd set off he crashed his bike, possibly because a wheel slipped on a wet metal drain cover. It had become dark and he was riding without lights. Luckily he was riding in an urban area so the local residents heard the crash and my friend got taken to hospital by ambulance. If the accident had happened on a country road there may not have been anyone around to report the accident.

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.

What's more problematic is that he may not accept a GPS tracker that is visible. Even after his accident he has refused to fix lights to the bike as he states that road racing bikes don't have lights.

The other problem is that he will not remember to turn the device on or off, so it will have to be permanently switched on. The other problem is that if the device requires batteries he will not remember to recharge them. It will also need to be permanently fixed to the bike as otherwise he will forget to take it with him.

I've looked at Velocate which states that "automatic charging via dynamo" and "The device is well hidden: You can use the velocate backlight for example". My friend might object to both features especially if they are visible. He might agree initially, but there is a high liklihood that he will remove them at the first opportunity as they are not in keeping with how he visualises the lines of a road racing bike. So this could fail our criteria.

I've also looked at Sherlock which states "It hides into the handlebars and results completely invisible from the outside". Unfortunately it appears to fail the criteria by stating that "It can be easily recharged with the microUSB cable provided in the box".

Has anyone any experience using these two devices or any other thoughts on resolving this problem so that my friend can continue cycling and be found when he gets lost.

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NUKe
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Re: Cycling with dementia

Postby NUKe » 27 Sep 2018, 2:31pm

I think a lot depends on the individual, the level of their condition, I would be more worried about them ending up in a dangerous situation than being able to find them when they are lost. If your friend can take a wrong turn on roads they know then what is to stop them turning onto the wrong road a motorway or busy dual carriageway, or as a friend did go the wrong way round a roundabout.
A simpler solution would be a mobile phone if you can get your friend to carry one. Smart phones can be set so they can be tracked, but even if you just go for the simple Nokia they can phone home if lost or you can phone them if worried
The safest way is for them not to go alone.
NUKe
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atlas_shrugged
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Re: Cycling with dementia

Postby atlas_shrugged » 27 Sep 2018, 2:49pm

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.

thirdcrank
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Re: Cycling with dementia

Postby thirdcrank » 27 Sep 2018, 2:52pm

Is it correct to assume that your friend lives alone?

DaveGos
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Re: Cycling with dementia

Postby DaveGos » 27 Sep 2018, 4:38pm

My father had dementia and went out on his bike one day and came back without it , probably went to the shops and forgot and just walked back home with out it . He then used to go walk about and on 2 occasions we had to let the police know we had a missig person . I would try the general tracker route of possible as he might also go missing even when not on his bike , but I have a fair amount of experience of those with dementia and know they can be very resistant to any change etc https://www.unforgettable.org/gps-track ... FXEALw_wcB

AlexK
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Re: Cycling with dementia

Postby AlexK » 27 Sep 2018, 5:31pm

atlas_shrugged wrote: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.


He's got no issue with wearing a helmet. However, on this occasion he cycled from home to another friend wearing the helmet, but forgot to put the helmet on for the return journey. It was on that return journey back to his home on which he got lost and had the accident.

All his friends have been asked to remind him of the necessity of wearing a helmet.

AlexK
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Re: Cycling with dementia

Postby AlexK » 27 Sep 2018, 5:37pm

thirdcrank wrote:Is it correct to assume that your friend lives alone?


He lives alone, but has a carer who visits him for 30 minutes each evening. It was the carer who notified me that he wasn't at home. So the carers may be willing to ensure that any device is charged up. It's not the same carer each night.

He lives in a small village which has a pub but no shops. He can't use buses so cycles everywhere.

AlexK
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Re: Cycling with dementia

Postby AlexK » 27 Sep 2018, 5:44pm

NUKe wrote:A simpler solution would be a mobile phone if you can get your friend to carry one. Smart phones can be set so they can be tracked, but even if you just go for the simple Nokia they can phone home if lost or you can phone them if worried.


He's had 3 mobile phones. Used them regularly. He's said that he now doesn't know how to work them.

eileithyia
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Re: Cycling with dementia

Postby eileithyia » 27 Sep 2018, 10:18pm

Hmm not sure what the solution is;
We were already concerned regarding Mum brought to a head when she disappeared for approx 4 hours on Xmas day one year...... sometime between 10am and 2pm she was not answering the home phone, and we can only presume driving somewhere between Coventry and Rugby until, in her words, she saw a sign for Coventry and went home again.... My sister had to collect her for Xmas lunch. Mum had never had a mobile and it certainly wasn't the time to teach her.

My son has learning issues, but is very good at finding his way around, but does tend to go off on a ride occasionally and we 'lose' him. We did get a light that carried a tracker but it did not last well and you say your friend is unlikely to ride with a light. He currently has a 'Monqi' phone, it is a childs smartphone but has a tracker system in it.

When a friend got dementia, he did on one occasion turn up at our usual lunch time meet spot but was clearly concerned that he would not find his way home and (unusually) joined some of us for the return journey until he was on familiar territory. Fortunately he did have insight into the situation and gradually over time reduced his mileage to the few local roads he could remember.
I stand and rejoice everytime I see a woman ride by on a wheel the picture of free, untrammeled womanhood. HG Wells

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LinusR
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Re: Cycling with dementia

Postby LinusR » 27 Sep 2018, 10:37pm

Thanks for posting this. Dementia is a terrible thing. Perhaps more so for people close to the sufferer. 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. Some very helpful suggestions above. I hope one of them works out.

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100%JR
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Re: Cycling with dementia

Postby 100%JR » 27 Sep 2018, 10:49pm

I can't imagine to understand what you are going through.Trying to make everything seem "normal" can't be easy :?
An old friend of our family(now 77/78) has been diagnosed with Dementia.He's always been an active walker/hiker(Peak District) but in recent years is only allowed to stroll around the village with a Tracker.Unfortunately he sometimes slips the net and leaves without it.Much Chaos and posting on Social Media follows and he's usually found either in the Woods near the Pit(colliery) he worked or on the way to his favourite fishing spot.
It's a tough decision whether to let them just go it alone but Trackers are a good thing.Unfortunately I can't recommend any in particular.

Mike_Ayling
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Location: Melbourne Australia

Re: Cycling with dementia

Postby Mike_Ayling » 28 Sep 2018, 12:17am

NUKe wrote: The safest way is for them not to go alone.


Agree

Mike

tim-b
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Re: Cycling with dementia

Postby tim-b » 28 Sep 2018, 5:58am

+1, sad but true :(
~~~~¯\(ツ)/¯~~~~

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Cunobelin
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Re: Cycling with dementia

Postby Cunobelin » 28 Sep 2018, 6:37am

I have personal experience, and this is the most unpleasant, vindictive and pervasive disease because of the gradual progress. This combined with the fact that the individual is often unaware of in denial of the situation.

One of the signs we had with my mother was her inability to cope with the short drive into town when there were roadworks. She has driven around the town for fifty years, but when roadworks diverted her from the normal route she was lost and in tears as she could not work out where to go. That was when we stopped her from driving

All you can do is support and keep them safe. The idea of taking them out on rides is excellent, but I am afraid that as the disease progresses the more danger to the individual. Even when escorted all it needs is for them to perform a manoeuvre that brings them into danger, because their awareness and the process is compromised.

Equally the problem is that they do not realise what is happening and either try and do things themselves, or get really upset, angry and aggressive when you try and prevent them doing something they want to do and in their own mind think that they are perfectly capable of

We had some big rows, tears and aggression when we stopped my mother driving. There can even be a bit of determination, Even after we stopped, she would still try, even going to the garage in a more lucid moment to get a new set of keys



In the OP they are lucky that they have people who care and are willing to help them enjoy life where they can, but please bear in mind that the reality is they become more childlike, and that this changes quickly and dramatically at times. When you first go out, they can be lucid and fine, but an hour later, the decision making process is severely compromised, Think of an adult with the mental processes of a two or three year old. Roads are a very dangerous place if this happens, and they are no longer able to make a judgement for simple things like a shoulder check before moving round an obstacle

Sorry to appear so negative, but I felt that honesty was probably the best thing here

eileithyia
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Re: Cycling with dementia

Postby eileithyia » 28 Sep 2018, 8:21am

Cunebelin you sum it up so well. When we got Mum to the GP's and referral to the memory clinic, she was told not to drive until such time as she had been assessed at the clinic. Oh dear the recriminations. In one call I had the GP was an idiot, didn't talk to her, she sat in a corner while he and my sister talked about her (none of it true), she believed she had been stopped because she occasionally got some 'vertigo' spells, which she never got when driving ... how she perfectly capable of driving, was perfectly safe (we had had other experiences as passengers), and had no insight that it was due memory loss. She even decided she would ignore the GP and drive anyway (thankfully she didn't and my sister removed the car from the premises).

Accompanying them is fine, but if as I understand it the OP, has indicated the friend currently lives alone, and has sporadic daily care visits, it is very difficult if the person takes it upon themselves to go out on their own. Even in a home a work colleagues mum continually tried to escape even standing behind a member of staff and memorising the key code lock on the door, then trying to organise another resident to go for a walk with her. On one occasion she had been found in Liverpool where she had originally lived but was now totally confused due to the demolish of the houses she had lived in. And did end up in hospital for 2 days before she was ID'd.

Without sounding cruel, what is the worst that could happen; they might fall, be involved in an accident, get sufficiently lost that they never come back and expire..... While it might be terrible for anyone else who might be an unwitting party in an accident, for the confused person it might be preferable to the long slow lingering demise that we watched Mum go through. At least they would have been out walking or cycling and enjoying their trip out.
I stand and rejoice everytime I see a woman ride by on a wheel the picture of free, untrammeled womanhood. HG Wells