When does “wandering” become too much for a care home?

[Bearz77]

I am just wondering if anyone has experience of their loved one with Alzheimer’s proving “too much” for a care home when they are continually wandering? Due to the obsessive thought of looking for her mum which started out of the blue 12 days ago and being found wandering at night by police and strangers, we had to make the difficult decision to admit mum to a care home last Friday as “emergency respite” with a view to it becoming permanent. I explained the wandering and constant attempt to “escape” and they said they could accommodate her.
I know it is very early days but she has apparently spent each and every day wandering the corridors wanting to get out. Today when I rang I was told they are having to monitor the exit points and that she’d been in and out of other people’s rooms. It was so hard to find her a place I’m now becoming worried perhaps she might be asked to leave if they can’t manage the wandering. The psychiatrist who assessed her on Friday at home said if that happened she would be taken to a specialist hospital - but I often seem to be told one thing and then something entirely different happens so I’m a bit mistrustful of the system.
So my questions are 1) if she is asked to leave, what should I be looking for in a new place and 2) would she really be taken to a specialist hospital?
Many thanks!

 

[Grannie G]

Hello @Bearz77

Is your mother in a specialised dementia unit? If so all possible exits should have a combination security lock and there would be no reason for staff to monitor them.

My mother was a terrible wanderer when she was first admitted to residential care and although she could wander freely within the unit, there was no way she could leave it.

I do hope the home doesn`t give up on your mother so soon after admission. They know it takes time to settle and your mother may calm down if given the chance.

I`m sorry I can`t answer your questions but it does sound as if either the care home is not dementia registered or they are not giving your mother a chance.

 

[Violet Jane]

I thought that one of the points of a care home is that it is a secure environment. Wandering is not unusual behaviour in people with dementia and, as Grannie G says, a home which is registered for dementia care should have locked doors which residents cannot open. If the home is unable to keep your mother then insist that SS help you find an alternative placement.

I don’t know whether there’s medication that can reduce the desire to wander. Is wandering a type of agitated behaviour?

 

[MartinWL]

A care home can only lock residents in if they are subject to a Denial of Liberty Safeguards order. Anyone else is free to leave at any time.

 

[Violet Jane]

Surely care homes catering for people with dementia or dementia wings of care homes would require such an order to be signed on behalf of a resident before agreeing to accept him/her.

 

[MartinWL]

Surely care homes catering for people with dementia or dementia wings of care homes would require such an order to be signed on behalf of a resident before agreeing to accept him/her.

It is an order made by the local authority not on behalf of the patient. The home might well do this at the earliest opportunity but isn't it the case that the lady in question has only just moved in?

 

[Violet Jane]

Oh, I didn't realise that. A friend told me that she and her sister had signed such a form in relation to their mother.

 

[Shedrech]

Hi @Violet Jane

Deprivation of Liberty Safeguarding (DoLS) procedures are undertaken in respect of a person moving into or presently in residential care

certainly family members will be involved, or a representative

Deprivation of Liberty Safeguards (DoLS) at a glance - SCIE

www.scie.org.uk

 

[Shedrech]

hi @Bearz77
I know the care home my dad lived in had several residents who behaved exactly as you describe (including waiting by fire escapes to try to use them) but the staff monitored the residents and managed them well

it may be that the staff looking after your mum are simply getting used to how she behaves and so how to support her ... it's good that they are letting you know how she is and not pretending all is fine .... you were clear with them when seeking a placement, and they said such wandering could be accommodated, so maybe give them time, though do chat this over with the manager so your mind is set at ease

if they actually cannot support her, it's best that they admit this and Social Services should help you find another home ... in which case you can describe in detail how your mum has been and ask what procedures any potential home has in place to support each behaviour, also what they are not able to accept/support

you don't mention that your mum is aggressive or violent, which can be what leads to the Community Psychiatric Team being involved and possible move to an assessment hospital

 

[Bearz77]

Hello @Bearz77

Is your mother in a specialised dementia unit? If so all possible exits should have a combination security lock and there would be no reason for staff to monitor them.

My mother was a terrible wanderer when she was first admitted to residential care and although she could wander freely within the unit, there was no way she could leave it.

I do hope the home doesn`t give up on your mother so soon after admission. They know it takes time to settle and your mother may calm down if given the chance.

I`m sorry I can`t answer your questions but it does sound as if either the care home is not dementia registered or they are not giving your mother a chance.

Thank you for your reply. It is a home with a dementia floor which is secure and has fob entry points. I suspect she is loitering around doors to try and get through them when someone comes in/out. They did say it would take time for her to settle - am just trying to do some planning (as much as you can do with this disease) in case we have to find somewhere quickly again. I will speak to the manager today as I have only spoken to staff on Mum’s floor so far. I believe the doctor (who is from Mum’s original surgery) is doing her weekly rounds today so it will be good to find out what her assessment is and whether Mum is given any extra medication (the psychiatrist did prescribe an anti-depressant on Friday but I don’t know if she has started on this yet).

 

[Bearz77]

Oh, I didn't realise that. A friend told me that she and her sister had signed such a form in relation to their mother.

No one had mentioned this to me so I will check this with the manager - thank you. SS haven’t really been involved as they were being too slow so I took my matters into my own hands. Good to know about this.

 

[canary]

When does wandering become "to much" for a care home?
That depends on the care home. Not all care homes are the same and even some care homes that say that they specialise in dementia care only want the early, easy stage of dementia. They cannot cope once the dementia becomes more advanced and that person starts displaying behaviours like wandering into other peoples rooms, incontinence and resisting personal care.

This does not sound like a care home that can cope with the more advanced stages of dementia. My mum was a constant wanderer and was in a secure home, so she could not get out and no-one turned a hair. There are places out there, but this is not one of them. If the doors arent secure then it sounds much more like a residential home than a dedicated dementia home.

Contact the SW about what the home is saying and start looking for somewhere else - try EMI units/homes

 

[Sarasa]

My mother was the same when she moved into care. She even managed to escape on at least one occasion. Like you I thought the home might ask her to leave, but they kept on working with different strategies and she finally settled to a degree though she still wandered. Her dementia is now very advanced and she can hardly walk but the desire to wander is still there though she can’t articulate that need any more.
Although a Deprevation of Liberty Safeguarding Order sounds horrible if the home apply for one it will mean a psychiatrist and a social worker will assess your mum and decide if she no longer has capacity to make decisions as to where she lives. This way you know that your mum does need to be in care, even if it turns out the home she is in is not quite the right one.

 

[northumbrian_k]

My first response @Bearz77 was 'never' but then I realised that some care homes just aren't equipped to deal with the challenges of dementia. My wife was a constant wanderer when she first went into her care home. She would go into any room, rattle door knobs etc. For a while she was quite aggressive too.

I was worried that the home would say that she could not stay so asked one of the senior staff. She told me that this was not unusual behaviour, they had strategies to cope with it, and my wife would not be ejected for doing what a person with dementia does.

Homes that can't deal with this sort of thing are unlikely to be suitable as dementia progresses.

My wife is subject to Deprivation of Liberty Safeguarding (this is the correct term not 'Denial'). The process was initiated by her care home and involved a Best Interests Assessment during which I was consulted. This has been reviewed and renewed every 12 months.

Of course no amount of assessments or paperwork can do anything to prevent wandering. The care provided in the right home can help to reduce or eliminate it, but it does take time.

 

[Latitude]

Only just seen this but my Mum was a nocturnal wanderer in her care home. She had advanced dementia. We solved it by moving her to a Dementia specialist home which was activity focused. She was busily engaged in different activities which kept her engaged and when she got tired she would quietly have a nap in an armchair or inher bedroom. The staff provided a real variety and mix of physical, mental, social and tabletop activities. They have a minibus and pre-pandemic had a weekly trip out with lunch as part of the trip. She loved it all and danced to music every day. The staff were brilliant and her wandering was restricted to easy to navigate zones and secure doors which the residents couldn't wander through but everyone else could. Keeping residents safe should be any care home's priority.

 

[hats]

Hello, I had a similar experience my mother went walk about. I cared for my mother for 6 years before she went into full time care. Immediately prior to this Mum stayed at her home with a 24 hour watch for 6 weeks, I slept with all the door keys. Mum wanted to go and see her mother who had died 30 years earlier. She managed to convince visitor's to the care home that she was also visiting and would leave with them. Care home then started a count of residents at visiting times.
It took me 2 years of work and intense activity at the last 6 weeks to find a Care home with a Nursing Home attached. The Nursing home had Higher skills to understand and cope with her individual needs. Mum had had a brain injury caused by a car accident and complex needs with her Alzheimer's. Following a very, very long struggle with the NHS, we managed to obtain CHC. However this was not finally settled until 6 years after her death. Fortunately Mum had signed and agreed a Power of Attorney. It is never an easy journey but if you can find an independent specialist to help you at least have an alternative voice to give advice. I see that others have mentioned the DOLS assessment, this is just one of a number of the procedures that will be requested as additional support is requested along your Mum's journey.
Hope this may be of some help, it is very important that the carer takes care of themselves. Best wishes.

 

[Badger66]

Only just seen this but my Mum was a nocturnal wanderer in her care home. She had advanced dementia. We solved it by moving her to a Dementia specialist home which was activity focused. She was busily engaged in different activities which kept her engaged and when she got tired she would quietly have a nap in an armchair or inher bedroom. The staff provided a real variety and mix of physical, mental, social and tabletop activities. They have a minibus and pre-pandemic had a weekly trip out with lunch as part of the trip. She loved it all and danced to music every day. The staff were brilliant and her wandering was restricted to easy to navigate zones and secure doors which the residents couldn't wander through but everyone else could. Keeping residents safe should be any care home's priority.

Dear Latitude - I have just joined the forum as my mother has only recently been diagnosed with Alzheimers. The fact she wanders means we are considering specialist homes and would love somewhere with constant activity but ones I have visited seem to have activities sporadically, rather than as a matter of course. Is there a way you conducted your search to whittle down the homes which were very active and could you recommend the one your Mum is in? Thanks so much for your help.

 

[nitram]

Dear Latitude - I have just joined the forum as my mother has only recently been diagnosed with Alzheimers. The fact she wanders means we are considering specialist homes and would love somewhere with constant activity but ones I have visited seem to have activities sporadically, rather than as a matter of course. Is there a way you conducted your search to whittle down the homes which were very active and could you recommend the one your Mum is in? Thanks so much for your help.

This is an old thread, Latitude has not logged on since 26/11/21

You could ask your question in your own thread, maybe start one by clicking on:

https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/post-thread

 

[Suzysheep01]

Dear Latitude - I have just joined the forum as my mother has only recently been diagnosed with Alzheimers. The fact she wanders means we are considering specialist homes and would love somewhere with constant activity but ones I have visited seem to have activities sporadically, rather than as a matter of course. Is there a way you conducted your search to whittle down the homes which were very active and could you recommend the one your Mum is in? Thanks so much for your help.

I would be interested too. It sounds amazing. My mum definitely needs more activities to get involved in.

 

[canary]

@Badger66 and @Suzysheep01

Activities are good for people with dementia and a decent home should offer them. However, you have to be careful not to overstimulate. If they get too tired there can be problems with mood and sundowning. As mums dementia advanced her ability to participate in activities declined so that eventually she was only able to watch, but this was enough stimulation for her.

I think most care homes have a program of activities in the mornings when the residents are at their brightest, and then in the afternoons it is quieter and many residents have an afternoon nap in their rooms or snooze in the lounge