working with dementia

[pgee]

I posted a thread a while ago in the music appreciation social group. Some people have added comments suggesting that the discussion might be better taking place in the main forum.
I believe some of what I have to say might be pertinent to people like myself who are employed working with people with dementia.
I talked about running a musical appreciation group in my day centre, and the very positiive affect on one particular client of regular exposure to music that she enjoyed, palpably so.
It actually became very emotive and the client bonded quite strongly with me. I'm the only male worker there, and other clients with whom I've bonded strongly have all been men.
I've worked in the care industry for years, and would go so far as say that this lady has made a deeper impression on me than any client I've ever worked with. She's actually made me think in terms of seeing past the dementia, seeing a rounded personality. I've come to believe that people with dementia, certainly in its earlier stages, are fighting to hold on to hold to their identity, to be the person they are rather than a person with dementia. This particular person shows a gift for life and the enjoyment thereof that I find uplifting, and which moves me close to wanting to cry at times.
At work I need to maintain professionalism, and don't want to be seen to be over involved with any one client. So I feel as if Im making a big step by putting these thoughts into the public domain.
I dont normally miss clients when they're not around the workplace, but I found myself feeling this person's absence when they went away into respite care recently.
Does anyone have any thoughts on any of the above that they'd like to share?

 

[Sandy]

Hi pgee,

Welcome to the discussion boards on Talking Point (TP).

I have moved your thread to the section of TP for people who are working with people with dementia.

Take care,

Sandy

 

[Tender Face]

Hello pgee. I’m sorry, there is little to go on from your profile and I am not a member of any social groups so have no idea of any previous ‘discussion’.

I will offer a parallel (non-dementia related). I worked for several years with some very disadvantaged and disturbed young children. For the most part I could remain detached and ‘professional’ ... every now and again I just wanted to run and hug one of them (strictly a no-no) ... bring them home with me ... Some of them so inspired me – watching their little (huge) personalities overcome their obstacles ..... and over the course of ‘therapy’ (play with music very much featuring in some cases) seeing the ‘true individual’ start to shine through .....

Just my own humble opinion, but I feel what you are experiencing can happen in many scenarios – and especially in any kind of ‘care setting’ ... maybe this person is giving you the job satisfaction you need? Without some positive ‘feedback’ in some form you might wonder why you were trying? Is it the person or their responses you have attached to?

In fact, if a care worker/therapist/nurse etc etc could hand on heart say that they had never been deeply moved by someone in their care – I would worry they were in the right job in the first place!!!! Forming attachments is important – and it sounds to me like you are maintaining professional integrity by even acknowledging the situation which has occurred. I don’t know if you have regular ‘supervision’ but this is certainly something to be explored with a line manager, who should fully understand and support you appropriately.

One other thought ..... I have difficulty not ‘getting involved’ with any frail little lady I happen to spot struggling in the supermarket if she remotely presents as my own mother did. Are there are ‘parallels’ for you with work and personal care settings where you need to ‘look after yourself’ and your emotions around your work?

Just thoughts, Karen, x

 

[danny]

Hi,I`m on the same thoughts as Karen.

I recently put an advert in the paper for care staff and used suggestions from resources I have recently been researching.

The advert ran on the lines,`Do you cry at sad films,can you laugh,sing,dance,do you like being with people,can you tell a joke/take a joke,have you thought about a career in care?

In my view to work as a carer you have to care,you can`t walk away at the end of a shift and not be moved by the experiences you feel at work.One volunteer recently asked me `was it alright to put your arm around a service user`This was not allowed at her last place of work.When working with people with dementia touch is one of the most strongest and effective form of communication.

Best wishes,Angela.

 

[sistermillicent]

I was one of the people who found your post about music and dementia very interesting and agreed that it would be good in the main forum.

I am very glad you have posted this one here, it is just lovely to know that there are people like you looking after the vulnerable elderly.

I know one has to observe boundaries and I am sure you do this - but I have long thought it would be helpful in your kind of work and mine (with the young) if supervision sessions were standard as they are for social workers and counsellors.

Post here some more,

Pippa x

 

[pgee]

Karen, Danny, Millicent,
Thankyou for your comments. I think it's both the person and the response that I've been moved by. The response that person made (makes) to me came from within them. I brought her love of music to the surface, she tapped into music that she enjoyed, shared her enjoyment with me. Music that I may have acknowledged but not especially tapped into (e.g. Frank Sinatra, Dean Martin) I found myself savouring and enjoying. One fine morning she bonded with another client who was new to the place, and I watched a friendship forming to the music of Elvis Presley. It moved me then and it still brings a lump to my throat as I recall it.
Other people noticed the change in "j". How she became more pro-active, confident. She stopped dozing off to sleep, and became very keyed in, showing a lively interest in what was happening around her.
The sheer enjoyment that comes across when she hears some music that she remembers, one would have to be a stone not to be moved by.
She turned 65 last year so is officially classed as "elderly". I guess she will go permanrntly into elderly care at some point. I dont actually work in elderly care. Im employed by the alzheinmers society. I hope "j" is allowed to retain her spirit for as long as he possibly can.
Yes, I have bonded with clients and felt emotive abnout my work before now.
Have to sign off now as the library are bringing my session to an end.
Thanks,
Paul

 

[danny]

Hi Paul,the AS are lucky to have you.

Keep posting about your work when you are able,it will give inspiration to others who use this forum.

 

[Tender Face]

Hi Paul - last thing anyone wants are stones!

Just thought of a couple of threads you might be interested in when you get chance ....

http://forum.alzheimers.org.uk/showthread.php?t=22652
http://forum.alzheimers.org.uk/showthread.php?t=25121

Your ability to use this type of initiative is wonderful ..... just a very humble opinion - but heaps of creativity sits alongside any professional training when dealing with this disease?

Please keep us informed how you are going on (and 'J' - if that's possible anonymously!)

Love, Karen, x

 

[pgee]

Thanks again, folks, for your positive feedback.
Thanks for the links, Karen. Ive posted on the one about music in care homes. Found the scottish football initiative interesting as well, and would like to know more.
Could talk about Fulham Football Club. "Fulham, I come from Fulham." Then perked up every time Fulham's Europa Cup run featured on London news. Is also well aware who Roy Hodgson is. Don't know if she's clocked that Roy has now gone to Liverpool!
Im back at work tomorrow after some leave. "J" still away in respite when I went. My line manager had tried to help her to maintain her placement with us. But social worker either couldn't or wouldn't fix any transport. It struck me that three big points of familiarity in her life were pulled away from her over the course of an evening and a morning, even if only temporarily. I think she was ill served, but hey what do I know! Hopefully she will back with us tomorrow - like this -
Best Wishes,
Paul

 

[muse]

Sandy - why?

Hi

When Paul's first posts appeared on - was it Tea Room? - I strongly agreed that this subject of "music in dementia care" should be part of the main forum. Paul tried, and it was moved to yet another obscure site. Every carer with someone in a home or day centre or whatever form of care should have some amunition to push for more music therapy. Music reaches the brain and emotions where words fail.

My husband's happiest moments, while he was still at home, were when we all enjoyed some music together. He would tap the beat, have a little dance, and look happy all over. Since he's been in a NH the only time I saw him happy was during a sing-along (Karaoke) afternoon. But don't underestimate the residents' taste and oversimplify. A sing-along is good fun, but a good piece of classical music or jazz/blues can also provoke some strong emotions and memories in some. It might not appeal to all, but give those clients a chance as well. You might be surprised.

Ok, it's important for professionals to have this discussion and exchange of experiences as well, but please, please, moderators, allow a thread on this subject on the main support forum?!? For a lot of people it can make the difference between quality of life and existance.

Thanks, Paul, for your contributions - Kathy

 

[pgee]

let's start a movement?!

Thanks for your comments, Kathy. Karen posted me a couple of links, and I've posted a message on one about the music in care homes, where I seem to be chiming with your thoughts.
I will feed some thoughts into the main forum as well.
In my music group Ive tried to juggle the needs of people with favourite songs that they like singing along to. And people whose musical tastes are more "serious", or even somewhat abstruse. Other clients will enjoy either approach. One client even went to the piano one afternoon and played a snatch from a Bach cantanta that she'd been listening to with me that morning. And got a round of spontaneous applause from everyone present.
I first started actively bringing "j" into the group when a home carer who dropped her off one morning told me that she'd been enjoying some jazz on the way over in the car. "J" smiling and showing agreement. Now I might want to say, "so play jazz to her in the car every bloody day!" Seen "j" respond positively to jazz and to familiar Carlos Santana guitar work, as well as to favourite songs.
Maybe we should start a movement. We could say that music - certainly for those clients who demonstrate an enjoyment of it - should form part of the care package for any person with dementia in any care setting that they move into. We get consent from clients, hand over information to the people taking on their next care package about the music that they enjoy. We put the ball in the court of whoever may be working with them. I think that not only would this incorporation of music into care planning be beneficial to clients, but to actively work with music would do wonders for the personal and professional development of any carers working with them.
Any thoughts?
Love,
Paul

 

[pgee]

an update

"j" returned to us last week from respite as if she'd never gone. Full of smiles, laughter, still very keyed into what's going on around her. The info that we'd had initially was that she was staying at a care home several miles from where she lives. But she apparently stayed with a family with whom she's stayed before, and had according her sister "a lovely time".
I wondered if her respite care in unfamiliar surroundings might hit her hard. And I think there was a quiet relief that she returned in such good form.
I don't, as a rule, miss clients when they're not at my workplace. But I found myself missing "j", feeling anxiety on her behalf, that turned out to be unfounded. I wonder if I'm in danger of getting emotionally over-involved. I believe that by setting up a situation where she's been able to listen to some of her favourite music over a period of time, I've been active in slowing the progress of her AD. It's created an emotive situation between us. I've got my own strategies for working with these emotions, and working around them. Both for "j"'s well-being and for mine. I don't want to place "j" over and above other clients. And any benefit that she's gained from any work I've done with her needs to be apparent not only in relation to me, but in relation to the other people around her. Otherwise there's no real benefit, and my work turns out to be counter-productive.
I think she's been lucky in the setting for her respiite care.
I know that husbands, wives, significant other people desparately need breaks. Maybe respite care needs to be turned into an enjoyable experience for anyone who needs it, rather than simply finding somewhere to "place" them. Could the same be said for residential care? I'm growing increasingly to hold the opinion that care packages for people with dementia need to be geared to their dementia, rather than their age. And yes, I do realise that dementia is an age related condition. But care work needs to be person centred. Not the big lounge with the Tv on all day.
Anyone have any thoughts on any of the above?
Keep me posted.
Love,
Paul

 

[dawnf]

Hi Paul,

I think youre doing great work and long may it continue. Person Centred Care is the way forward in dementia care. Knowing the person rather than the medical problem is more significant to those with the disorder. What job they did, what their hobbies and likes, dislikes are etc are important to enable them to have a fulfilled life.I have seen people light up and be invigorated again by having their hair done...especially women. The person with dementia is still there, if we know who they are we can go a long way to making their lives worthwhile and not have them sat in a room watching pointless TV programmes.
Good Luck with your work Paul.

 

[pgee]

Thanks Dawn
There's a man I keywork who has Parkinsons. Came back today from a stay in respite care. He apparently made a pointed quip whilst there to the effect that the next time he went outside it would be the first fresh air he'd had since Sunday. He was told very seriously that there was air circulating in the building. This is the place that's apparently the local council's brand spanking new flagship care home. He's been in respite care before and doesn't like it. His comment, "you just have to take it on the chin!"
Can anyone think of any good reason why he should have to "take it on the chin"?
And do we live in a world that's gone quite mad?
Answers on a postcard. . .
Love, Paul

 

[jackie place]

Working with demantion

Hi Paul and Welcome to Tp.

you are doing a wonderful job and I admire you and Thank you. The rest bite that my husband is in do believe in Music and sometimes have it on all day and the residents do tap there feet to the music an smile which is lovely to see. Some days they just sit in the lounge and have the Tv on all day which is a shame cause they fall asleep and think that it is boring . Another suggestion is animals the rest bite has a cat which has its own basket and sleeps downstairs nr the Reception door again the residents talk to the cat and this makes them smile they also have a a cage with 4 budgies in which the residents enjoy whistling and chirping too. There is a few that shout out which they cannot help on the whole this rest bite is very good and the staff do care and take things in personally. Keep your good work up and let us know what is happening.

 

[miss cool]

Hi the music is good but one problem i am a 50 ish person with AD and VD now my problem is music i love music, just ask my noughbers, but up to date. at day care they play music all the time,they couldent play mine. i except i have to mix with mature people due to the illness and that is fine but no won understands the music i like. but on saying that its my problem. but yes play music. love Miss Cool xxxxx

 

[sistermillicent]

I am absolutely convinced that when I am in a care home they will play me Abba all day long,believing it to be something all my generation know and like. Not me. I sympathise, Miss Cool.

 

[pgee]

music in care

I would say if anybody is that fond of Abba, then give them an opportunity to listen to Abba all day long. That should not be an excuse to say "but they like Abba", and then inflict round the clock Abba on all and sundry. Nor should the premise "people like music" lead to an assumption that all the people will blissfully absorb the music of Abba from morning to night. Placed in a give and take situation I could tolerate hearing Abba for a time. There might come a point at which my tolerance would be stretched too far.
I could happily spend hours listening to The Who, Led Zeppelin, Roy Harper, and plenty of jazz. Not standard care home fodder, I realise. And not everyone else's cup of tea. But I have broad tastes, and I hope I am able to sit alongside you and to enjoy whatever you happen to enjoy.
I also want to eat vegetarian food. And please DO NOT serve me fried eggs. I want to be able to enjoy a glass of beer or wine. And to watch the footie when there's a televised match.
I have no wish to tread on anyone's toes with any of the above. But nor do I want my needs and interests to be swept away in the functioning of the institution.
I hope that in the hypothetical event of my going into residential care that a new dispensation has come about, where person centred care supercedes the needs of the institution. And where any notion of care home fodder will have been consigned to the dustbin of history. And where, whisper it quietly, the care situation can actually be made enjoyable for the people placed in it.
I also hope I will have the chance to sing along to "Come Fly With Me", with an ear to ear grin on my face, whilst blatantly flirting with an attractive female carer!
Hope all this makes sense.
Love,
Paul x

 

[sistermillicent]

I will listen to those with you ,Paul, if you are up for a bit of Bernstein and Woodstock, and I don't like citrus in the mornings. I will tolerate some Abba.

I will drink too much sherry.


Seriously, your point about person centred approach to care of the elderly rather than institution centred is a very good one, and far more satisfying for both residents and staff I should think.

 

[pgee]

music in care

Yes, Pippa, I'm up for a bit of Bernstein and Woodstock. And if you get citrus in the morning whilst I get fried eggs, we can blatantly exchange breakfasts whilst making a big point of moaning like mad!

Make sure they don't try and ration your sherry!

All this is very flippant and hypothetical, I know. But I want to know how the situation can be evaded where a person who goes into respite care comes out using words like "incarcerated" and "take it on the chin". Or where certain people could transfer from day care into elderly care, and could stand to lose so much of their quality of life in the process.

Maybe I'm barking into the wind. But I've seen how people with dementia can still be fighters and free spirits. Whatever stage of life anyone is at their spirit should still be able to be nurtured and not squashed. I want to be able somehow to campaign for a system of care that recognises that. And on the basis of my experiences over the last two years, I feel pretty sure that I want to spend the rest of my working life putting myself on the line on behalf of people with dementia.

Best Wishes,
Paul