Late onset Alzheimer’s at 67- advice has he went missing but was found thankfully today

[Lindsey79]

Hi everyone,

I hope everybody is safe and well and coping as best as possible in this Second lock down.

i’m after some advice my dad is 67 and during the pandemic has been diagnosed with late onset Alzheimer’s it’s progressing very fast and he’s gone downhill very quickly.

He really likes his independence refuses to accept he is ill; we have to grind his tablets as otherwise he wouldn’t take any medication because he doesn’t believe he is sick, and gets angry and agitated if we mention it or if the doctors mention it.

He likes to walk the dog several times a day we have a GPS tracker so that we can make sure he is safe and know where he is. He normally goes for 20 minutes max and follow the same route.

For the last couple of days he’s been talking about the world ending; it’s been a current common theme that he says that he wants to move out house with another woman who doesn’t exist.

he hears voices and he is constantly in a delusion where these voices control what he eats, what he can do and we cannot reason with them if we do try to he gets agitated so we try not to.

This afternoon he took the dog for a walk but was going for a really long time went a lot further than he’s ever gone before. my brother took the car and went out to try and get him to come back but he got very agitated with my brother refused to come home. Short of grappling him my brother couldn’t convince him to get in the car or walk home with him.

He stood in a field for nearly 3 hours while we tried to convince him to come home and eventually it was getting so cold and we were so worried we called the police and the police managed to track him down with the GPS tracker and they brought him home.

We’ve had zero support since his diagnosis. He has never been seen face-to-face by a doctor or a nurse and all they can do is prescribe medication. Today the dementia team confirmed that there was no medication that was available to him that would help just promethazine to sedate him and to calm him down.

So we are stuck locking the door because he just wants to keep moving out and leave us and doesn’t want to be where we are. We hate sedating him and we feel awful about this, my mum and my brother and me are broken and we just wondered if anyone could offer us any advice as I’m sure many of you are in a similar position.

 

[MartinWL]

This must be awful for you, and ever so difficult to deal with. It does sound like care home time but on the other hand care homes are prisons currently and he would not be able bo go for walks, a healthy thing to do.

An assessment by social services might be worth a try, and I think I would be inclined to try and get referred to s consultant to review whether any medication might help. I feel for you especially as he is at 67 not very much older than me!

 

[canary]

Hello @Lindsey79 and welcome to DTP.
Im sorry to hear about your dad and Im glad that the police managed to bring him home.

Firstly, if this behaviour has come on suddenly, it is worth getting him checked over by a doctor to see whether he has an infection of some sort - especially a UTI or a chest infection. Infections in people with dementia often dont show the usual symptoms and only result in increasing dementia symptoms.

Assuming that everything is clear, then it sounds like your dad has reached a particularly difficult phase when they suddenly get a desire to go out and/or go "home". As you have realised, this is an impossible challenge as the place they want to move to is really a state of mind, rather than an actual place. My mum wanted to move back to her childhood home which was bombed in the war. What this represents is a desire to go somewhere where they feel safe, are with people that they know and can leave the confusion of dementia behind. People who have lost the insight to know that they have something wrong with them (called anosognosia) are, nevertheless aware, deep down, that Something Is Not Right, but they do not understand that this something is them, so they blame everything else - family, carers, environment, place where they are living. They feel that if only they went somewhere else then everything would be all right again. Hence the desire to leave.

This desire to go somewhere else is all consuming and cannot be stopped
It is a game changer and once it starts, then safety is paramount.
You might want to use the Herbert Protocol which will make it easier for the Police to find him if he goes missing again. This link goes to the met to give you an idea of what is involved, but if you google Herbert Protocol and your county you will find information and a form for your area.

People with dementia at risk of going missing (Herbert Protocol)

People with dementia can be at risk of going missing. Use the Herbert Protocol to write down information in advance, so you can give it to police quickly if they go missing.

www.met.police.uk

One member on here used to follow her husband around every time he went out in order to keep him safe, but I honestly dont know know how she did it. Practically, though, the only way to prevent this is a secure care home.
I am sure that this is not what you want to hear.

 

[Grannie G]

Hello @Lindsey79

This really is one of the most difficult stages and I really feel for you.

A couple of points.

Does your dad`s doctor know you are grinding his tablets? Some medication is slow release and grinding may change their effectivness

Does your dad carry ID?

I had a dog tag inscribed with my husband`s name a contact number and the fact he had dementia a diabetes. I know Trackers are the most up to date method now but a tag on your dad`s key ring and also on the dog`s collar could provide additional support.

My husband`s walkabouts slowed down when his mobility became compromised. It`s not what I would wish on anyone and your dad is still quite young but some medication does affect mobility.

 

[lollyc]

Definitely check for UTI or chest infection. Delirium could certainly account for his delusions and paranoia. Mum saw / heard all sorts when in its grip.
Has he been prescribed any antiphsychotic or anti depressant medications?
These might help with these feelings too - although I appreciate that getting him to take the tablets may be difficult. Maybe ask if he can have liquid version, if you think that might be easier to administrate.
I'm afraid, certainly in my experience, lack of support is the norm, it's not just due to Covid.
I have no experience of wandering (my PWD can't walk ) but perhaps you could get someone to walk with him? We have companies in our area that provide "Personal Assistants" - no uniforms - that could be a companion - if dad would accept it.
Assuming the delusions etc., are under control, and looking to a future post Covid, I would start to investigate what groups / activities are in your area that he might be able to join. Locally we had a Men in Sheds, a farm based group and one centred around gardening - all offering a more physical activity than the usual singing options!

 

[nitram]

Does your dad carry ID?

A good form of ID is a dementia buddy device.
When a smartphone is held against them the phone displays the wearer's name and a maximum of 2 phone contact numbers. Emergency services will recognise them, they also say 'tap me with NFC'

They cost about £5 each although charities and councils in some areas subsidise or bear the cost, when you apply to buy one the price for your area will be shown.
Poster
https://www.dementiabuddy.co.uk/uploads/GuardianAngelPoster.pdf .
Order form
https://www.dementiabuddy.co.uk/guardian-angel-devices .

 

[Arkady]

Hi @Lindsey79 I’ve got no answers but I’m in a similar situation and am in the process of moving Dad to a residential care home. He wants to go out for a walk but gets lost, and I’ve not found a tracker that he’ll keep on. He’s needed to be rescued a few times.

My dad’s Alzheimer’s isn’t that far progressed but he can’t keep himself safe, and I can’t provide the care he needs. It’s pretty horrible but moving to a care home feels like the best of a bad bunch of choices.

You can probably put it off for a bit by making sure somebody goes with him every time he goes out, take it in shifts with family members? You have to consider your own welfare as well as his though. Managing a loved one with dementia is a constantly changing minefield of challenges and you may only realise it’s too much when you’re past the point of being able to cope (and you’d be far from alone in that).

 

[Lindsey79]

Hi @Lindsey79 I’ve got no answers but I’m in a similar situation and am in the process of moving Dad to a residential care home. He wants to go out for a walk but gets lost, and I’ve not found a tracker that he’ll keep on. He’s needed to be rescued a few times.

My dad’s Alzheimer’s isn’t that far progressed but he can’t keep himself safe, and I can’t provide the care he needs. It’s pretty horrible but moving to a care home feels like the best of a bad bunch of choices.

You can probably put it off for a bit by making sure somebody goes with him every time he goes out, take it in shifts with family members? You have to consider your own welfare as well as his though. Managing a loved one with dementia is a constantly changing minefield of challenges and you may only realise it’s too much when you’re past the point of being able to cope (and you’d be far from alone in that).

Thank you I’m so sorry you are having to make such a difficult decision but it sounds like you are very strong and doing what’s right for you both. I suspect we might need to do the same next year.

 

[Lindsey79]

This must be awful for you, and ever so difficult to deal with. It does sound like care home time but on the other hand care homes are prisons currently and he would not be able bo go for walks, a healthy thing to do.

An assessment by social services might be worth a try, and I think I would be inclined to try and get referred to s consultant to review whether any medication might help. I feel for you especially as he is at 67 not very much older than me!

Thank you ❤️