Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

Opinions are my own obviously but happy to try and help.

i just don’t find it fair on him. To put it bluntly he hasn’t a clue what is going on all he knows is he has 3 cans of beer on a Friday night and takes 2 pills. Surely telling kids on the street that he loves them is not ok. I’m worried he ends up saying it to the wrong person and then what??

I posted this - unfortunately, from experience. His wife is letting a vulnerable individual with questionable capacity wander the streets for hours at a time. And from what this poster has said, she clearly isn’t coping and finds letting him wander about unsupervised preferable to dealing with his angry outbursts - which are consistent with dementia. If she isn’t prepared to step up, someone has to and any concerned family member can register a concern. If she doesn’t have an LPA it’s too late for one now if he’s lost the capacity to understand and agree to one, so the court of protection is the best option for safeguarding. At what point would you say it’s time for family to step in, given that he’s approaching strangers and telling children that he loves them ? When he’s beaten up ? When he’s accused of child molestation ?

If his wife has been appointed guardian by the court of protection, you can registered a concern about her actions with them. If they consider there has been abuse on any level they can then appoint an independent guardian instead.

I have (significant) professional experience with families in this situation, I understand the risks and that it is complex and hard. I'm sorry if you've been through this.

The thing is, we don't know this man's capacity. FTD is a complex diagnosis and people can act in ways that are very difficult for families but that doesn't mean they have lost capacity or that we get to take away their choices and opinions.

Walking for hours, in and of itself, isn’t a risk. If I decided to spend hours a day walking you might think me odd or mad on exercise but you wouldn't insist I needed a care home or reporting to social care. Poor personal hygiene might not be great but it needs to be a certain level before we actually need interventions because it's something that is very personal. I might have always only had a bath on a Sunday, and a strip wash now and again, I'm not going to die from that even if you think it's rank.

Talking to strangers is a risk yes. But what is a proportionate response to that? How much of a risk is it? How many times has he been in trouble before? Should we prevent him from leaving the house because something might happen? There are things we could consider, his wife might feel up to walking with him once a day, his brother once a day, maybe a carer could come and walk with him once a day too that would reduce some of the risk without restrictricting him as much and without as much pressure on family as expecting them to walk for hours a day or accuse them of "not coping".

Going to social care or the office of public guardian (and if England it would be to apply for deputyship which is a long and expensive process which only looks at finances anyway - care choices are made in best interests by social care / family in best interests meetings or one off hearings by the court) would be a huge step likely to make the wife feel defensive rather than supported. The family could work together to support rather than blow it all up.

What are your top tips for positively interacting with a person with dementia?

The OP hasn't been on this post for a while so I hope they won't mind me giving you some of mine

Try and step into their world, they can't step into ours, don't argue about what they are telling you, it's real to them.

When people tell you things, pay attention to how they are feeling and respond to this. Acknowledge if they sound upset, scared, happy etc. Look at the VERA technique.

Even in very late stage dementia there is capacity for joy. We retain our senses. Use touch, music, taste, textures. Blow bubbles, have a hand massage, do a foot spa, try a little bit of chocolate.

Make it personal, what does the person love or hate, what did they do for work, what hobbies do they have? Look through old photos together or memorabilia. Watch clips of their favourite singer on YouTube. Cook together, if they can't do everything maybe they can stir or peel while you do the other bits.

Help them be as independent and useful as they can. Let them do things, even if it would be quicker to do it yourself, even if you'll have to redo it later. Activity is meaningful to us all, even the small things.

It depends on what you need really, some of the larger care companies can provide care packages of up to 24 hour a day. This could be supported by district nurses for any actual nursing needs. I can't recommend any specifically (not appropriate for me to do so due to my job).

You could look at personal assistants if you preferred that route. There are some agencies that will assist in finding these. Your local council might have a service to match with PAs or there are organisations such as Penderels Trust (depending on area) who can help and have registers of PAs. Some PAs will have previously been nurses if you specifically want this but they are much rarer.

There are care brokerage agencies who can support with arranging care for people who are self funded. carehomeselection.co.uk/home-care/home-dementia-care/
Services like the one above- I have no experience of anyone using this so can't give an opinion but they sent me some info a while ago. You could discuss with them if there are nursing needs.

Marie Curie might be able to support with some nursing care dependent on stage of dementia and needs.

Most people even in advance dementia / end of life living at home can manage with a balance of carers / district nurses though.

If this isn't enough have you applied for CHC funding? As they would then source specialist support if needed.

It sounds like a very difficult situation, it's hard to advise much without knowing what the level of need is.

The CHC being declined because the person is well cared for isn't appropriate though and you should seek some advice on that. Beacon CHC offer a small amount of free advice and some paid services to appeal. There are some helpful Facebook groups around too that offer support to people in these situations.

Technically you could hire a nurse (RGN or RMN - I would probably decide which based on if more physical health or more mental health symptoms) from a nursing agency, the same sort that supply staff to cover hospital wards etc. when they are short. However it would be an expensive undertaking and I'm really not sure of the circumstances in which it would be worth doing.

You mentioned that the person doesn't want to go to a hospice, do they need end of life care? Hospice is usually last couple of weeks of life or short term stay for symptom management in the palliative period (usually last year). Are they still able to clearly state they don't want this or was this a prior directive?

I'm mostly wondering about their current capacity and how much they can engage in choices about their care. If they can be clear about what they don't want are they able to be realistic about what they do or are they not able to recognise their needs? Sometimes we need to make choices for people to keep them safe that are not in line with what they are currently saying but would be in line with what they would do if they were able to fully understand the situation.

@MTistheDB it's so hard, and you always feel guilty (but I promise you that just means that you care).

I think in your situation I would probably persist with looking down the route of more PA hours. I have known some truly phenomenal PAs who have gone above and beyond and almost become part of people's families, it can take a bit of work to find the right match but they are out there. Maybe have a chat with Penderels Trust and see what they offer local to you or if they can recommend some local support. If you do end up getting CHC payments they would hopefully be able to take over payment for this.

Hello! Bit late to this thread but I'd definitely love to pick your brains. I'm an RMN and currently work as a mental health nurse in a general hospital setting. I'd love to develop my knowledge base in dementia and wondered if you would recommend any specific accredited courses? I've got a few free ones lined up via the British Geriatric Society etc but I'd love to do a PG Dip or Cert at the minimum. Longer term I'd like to work in the memory services side of things. I've had a look online but have struggled to find something just right and I'm wary of self funding the wrong course and being stuck in it! Thank you

Hello all

Apologies for some reason I wasn't getting notifications on this thread but I see there have been answers from others which is great!

@Katiehod I did a PG dip in dementia care and am also SPECAL care and Namaste care trained.
My advice would actually be to join the Bank of a specialist dementia care home in your area, I think the memory assessment service would snap your hand off tbh.

Sorry for those I haven't been able to answer, life has been ever more busy and as I say I wasn't getting the notifications.

Best wishes to all xx

@Katiehod the university of bradford or university of worcester both have very good dementia courses. Including dementia care mapping which is well regarded. Both do some excellent research. Exeter might be worth a look too, they led the IDEAL project.