Talk to Red & Yellow Care about enjoying time with family or friends with dementia: £100 + tickets to be won NOW CLOSED

[AnnMumsnet]

Red & Yellow Care - an independent healthcare company who specialise in dementia and offer both diagnosis and post-diagnostic care and support - want to hear from Mumsnetters about how to share enjoyable moments with loved ones who have dementia.

A report recently published by Red & Yellow Care in association with Alzheimer's Society found that 43% of UK adults don't think it is possible to live a good life with dementia.

Dr Nori Graham, Medical Director of Red & Yellow Care said: "This must change fast. It is this belief that gets in the way of people seeking help, getting formally diagnosed, and ultimately receiving the care they need to live well. We must reinforce the reality that a good life is possible for everyone – including those with dementia."

Red & Yellow Care now would like MNers to think about this topic and share their thoughts on this thread - add your comment and you'll be entered into a prize draw where one MNer will win a £100 John Lewis voucher plus two tickets for the Alzheimer's Show in London (16-17 May, 2-day ticket but not travel included) - worth £64.

Living with dementia or caring for a relative or friend isn't always easy, but likewise most of us know that it doesn't mean that you can't share enjoyable moments together. Red & Yellow Care would like you to share on this thread how you enjoy spending time with loved ones who have dementia. Has the way you spend time together changed, or not at all? Have you changed the activities you do together, or the frequency? Perhaps the topics of your conversations have shifted slightly? What do you enjoy most now? What new attitudes, if any, have you adopted overall?

If you don't have a loved one who is affected by dementia, how do you think you'd cope with this diagnosis in a close relation? Where do you think you'd look for support?

Whatever your views on dementia support, they’d like to hear them.

Thanks,
MNHQ

I have just written a massive post and my iPad crashed and deleted it :(
Dementia is tough but there are still 'good' times to be had. Appreciate the small things, ask for support when you need it and realise early on that sometimes you have to go with the flow so to speak.

I haven't any experiences of Dementia but I have seen friends go through the upset it brings & I think although As j am one if life's stronger people I would be able to cope on the outside but inside I know my heart would break. I have a close family so I know we would all get through & cope with the support of each other but I would never reject any outside help if it was for a positive reason.

Before my grandmother died we used to chat on the phone and it was a little difficult, especially as she used to forgot the words she needed at times. When I became pregnant she was so pleased and we talked a lot more - she told me all about expecting my mum and it seemed to make a connection that enabled her to talk a lot more, never stumbling over her words and being how she used to be.

My lovely, beautiful Nan had dementia. We had some fantastic times even with it that I wouldn't trade for the world! I remember taking her for a walk in her wheelchair, and for some reason I started jogging with her, which made her giggle, so I ran. By the time we go to the end of the road she was screeching with laughter as she hadn't gone so fast in years! We took the corner on 2 wheels as she screamed for me to speed up, and we laughed as we turned and slowed down. Someone was planting their garden, and she loved the flowers and she joked she would come back in the night and steal them...I think she was joking...

When it got worse and Nan went into a home because we couldn't manage her any more, we still had fun. She would tell me about people she worked with (recently in her mind), and how her mum was coming home any minute. I loved her life stories and how she made me a part of her history. I "sneaked" her a glass of baileys - with the nurses permission of course and she and I sipped at it like naughty children.

No it wasn't easy. When things got much worse and she refused to eat I had to get creative. I told her the chef knew she was a good cook, and wanted her opinion on food and she would eat to tell me how to improve his cooking.

I found when Nan got distressed in a memory, instead of telling her it was in the past or it wasn't real that it was real to her and it was best to help her as though it was, because it WAS to her. In one conversation she became very upset that she was stranded abroad where she lived for a few years and couldn't afford to get back to the UK. I told Nan my husband was an airline pilot and he could give her a flight home. The relief was instant for her as she "flew home" in her mind in a few seconds and told me what a good man he was!

Sorry for the long post. I love my Nan very much, and nothing will take away the wonderful person she was. There was still fun there, even if I had to change how we had it, and how I interacted with her. I spent more time with her after the diagnosis because I realised how fragile things are and I learned to be less selfish. I treasure people more now.

Sorry - just to add quickly my Nan died about 8 years ago now, and the memory about the wheelchair is one of my favorite ones. There are a lot of sad ones and it was so very hard at the time but that wheelchair one makes me tear up every time just hearing her laughter!

Since posting on Thursday, things have reached a point with my MiL and I've posted THIS THREAD looking for help. If anyone on here has any insight I would really appreciate it.
TIA

We had a lady who we were friends ( not that close) with that developed dementia. I used to visit her every few weeks, and luckily she was always happy to see me even though she couldn't remember who I was. I used to sit and listen to her chat even if i couldnt understand what she was saying. She was in a home as she had no family around, it was quite sad.

I have no idea where I would go for support if this did happen to a close reletive. I am not sure what I would do either. If it was a close relative I didnt live with I would try relieve the partner that lived with them from time to time from care if they wanted it and I could.

I agree with many others that are saying small things "in the moment" are fun and give pleasure to dementia sufferers. I often get MiL flowers from the Scillies because they used to remind her of holidays she'd spent there. I still get them and she loves them, either because they are lovely in their own right, or because sometimes she has a memory of them. The important thing is for me to have no expectations, and then if she has a memory that's lovely, and if not she still enjoys the flowers.

I would look for support online with support groups. I know that the university music building runs special concerts for people with dementia and their carers and I would attend events such as this.

Pets are a great way of connecting with dementia sufferers, particularly when they have problems remembering their nearest and dearest.

Looking at photo albums with my Nanny always made her really happy & just spending time with her enjoying each other's company and talking about things that she could remember was lovely.

I am quite enjoying my mum telling me where she's been and what's she's done, it's usually quite jolly and best of all she never has to leave her armchair! I have found the contented dementia by Penny Garner & Oliver James very useful, I now don't try and re orientate my mum or question any of her exploits, she enjoys telling me and I am happy that she is, for those moments, happy.

I am fortunate enough not to have experienced a loved one go through dementia (although this may be because many of my relatives died young). I think I would find a dementia diagnosis very difficult, I know little about the condition apart from its incurable. I really appreciate everyone who has commented so far and suggested things to help, there have been some wonderful ideas so far, and it is lovely to hear that you can still have some special moments together. I think I'd look for practical support from the council and GP, and emotional support from charities and family/friends. I hope you keep a copy of this thread for people who might be searching for such information.

Unfortunately watching someone decline with dementia just dispelled any remaining hope I had of a god existing. The person in question had left us long before they actually departed. Better care would no doubt have made their final years more dignified. I've seen programs about dementia villages in scandinavian countries which look very good, but perhaps they only cater for the minority of people rather than the majority.

My husband's nan had dementia which eventually meant she had to go into care for her own safety. Weekly trips were made to see her and take her out to the places she remembered from childhood as those were the memories that survived.

She did get to meet our first child, even though we are not sure she remembered the meeting or that she was now a great-nan. At least we have the photos from that special meeting.

It was not easy on the family and hard on my husband when his nan stopped recognising him and thinking he was his Dad. All you can do is what is best for everyone involved.

We do not have first hand experience with dementia within our family, but my OH gran Flo is in a care home and she has friends there suffering from it.

Year ago we made a decision to get a Newfoundland dog - not only because it is cool looking dog but mainly because we wanted to help others. We take him to visit older people in care homes, some of them suffer from dementia - they might not recognize people or knew who we are but they always have a smile on their faces while "playing" with our big furry boy. It it worth it and it must count for something; knowing that we can provide 5, 10 minutes of happiness in their daily routine.

What I notice while visiting care home where gran is that a lot of people / family members have no knowledge of the condition and loose their temper when they shouldn't - I can only imagine that it must be frustration and scary at times but who will support them if family members fail?

patience i think.its a bit like they are regressing back to children sometimes.asking you the same questions over and over can be a very common occurance.your innitial reaction afte rthe fifth time would be "i told you a minute ago what the time was"you have to think before you speak sometimes.think,realise this is my friend/relative they are ill they dont want to annoy me and to them they are asking this for the very first time so my anger would embaress and upset them.
i find they music helps.music they used to enjoy.sometimes i find she lives in the past.and ive had to come to terms with almost joining her in that world.
shell ask where someone is that died so many years ago,clearly thinking they are alive.so if i told them they are dead she would NOT understand and in earlier stages would be slightly embaressed and move on but in later stages it could cause great panic attacks.it could cause her to become agitated and not know what happening to her or why even i might be lying!!
agression:it can be common for some and not so for others ive found.again you have to remember this isnt them.my loved one would never chuck a book at her grandchild for trying to burgle her but one day she did as she didnt new who he was and thought he was burgling her.so on this note its also important to let others know.young ones and old of how things are.
it does require lots more planning and thinking before you do anything.
if you want to go out finding somehwere quiet or that has things to look at.so that if they arent having the best day conversations on the little things can be made or even had one sided.a beautiful view,a lovely flower field.
on better days going to places they remember can be great.we visited many places from the past.her old village.school even!!and some days she would recognise and be able to think fondly of it.
taking photos was very helpful.even if she didnt always remeber who the person or what we were doing in them there is a recolection i saw her in her often,that this picture was comforting or slightly familiar.
getting the kids involved in that is fun too.
she liked to be read to by the younger ones too.and sometimes by me.
there are many things to do.but the important thing is thought,patience and planning.

With my grandma we learned to visit for short periods so as not to tire her out, talk about things in the past which she remembered clearly, and not to mind having the same conversation over and over again about short term things. Also following up on the care home to ensure she was being cared for properly as she was quiet so easy for them to think she was OK without checking, and she'd easily forget whether she'd eaten, bathed or taken medicine. Learned to watch out for when she was covering up what she'd forgotten: 'what did you have for lunch?' 'Oh...the usual things'

At first we discouraged the behaviours related to my grandmothers dementia but then realised that she found pleasure in taking tissues in and out of their box and tying and untying carrier bags so made sure she had some to keep herself busy with. We also spent more time talking about the past than we would of otherwise done but still told her our news and showed pictures of what we had been up to, we don't know how much went in but it was good for her and nice for us. We also would put the same perfume in her from her younger days and had the priest give her communion as her faith had been important to her before the condition set in

It's utterly heartbreaking. Sure there are bits and bobs of good times, but it's the worst disease I have had close contact with (and I'm including cancer, Parkinson's, heart disease and motor neurone).

I think not pretending it'll all be ok to just get the photos out and play music from the war is quite fundamental. Always go along with the persons wishes if they can articulate them. The amount of times I have had to take my Nanna and my Grandad 'home' when they are already there. Endless trips around the block!

My best wishes to those suffering.

a close family friend had dementia.it was sad to see her forget things and really try to remember. She loved us all to go round and see her and loved to see the children playing. I used to do her hair for her and that really put a smile on her face. She has sadly passed away now but i hope that we made her happy.

I am the eldest child, my siblings live abroad, and my mother is coping, just, with my father who is getting very frail by the day and the dementia is hard to cope with.

We have looked at having them live with us, but `I feel my father is better off in his own home, he knows where he is, a new house ill just confuse him more, so at great expense to us, we will move 100 miles to be nearer them, I will give up my work so my mother has my support daily. It will cost us dear, but what else can we do? My sister is quite wealthy, we have nothing to spare, it does grieve me a little at the moment as fuel costs a fortune to visit weekly.

My father has gone from being a very domineering husband and father to someone who is meek and acquiescent, he is not ready for a home yet, but the day he doesn't know who we are is probably not far off. I m not looking forward to the day.

I spend time with a local person with dementia. It kind of came about a bit oddly with us spending time feeding the local animals at a smallholding (she had the veg to spare!). She's just a local friend who enjoys spending time with me and the children these days. Sometimes I forget she has dementia (as I am not from her past, I am in her present as it were). We don't spend huge amounts of time together so I don't know how I would cope with a diagnosis. It would be difficult as a family but I guess making good memories together would be my priority.

Thank you for all the posts: very interesting reading.
Am pleased to say FurryDogMother has been selected as the winner of the voucher and the tickets. I will message you now.

OMG :) Thank you :)