MumsnetGuestPosts (MNHQ) Tue 20-May-14 11:46:22

Guest post and Q&A: Dementia Awareness Week - 'we must keep talking about it, no matter how hard'

If you think a loved one may be suffering from dementia, it can feel like an impossible subject to broach. This Dementia Awareness Week, Rachael Doeg - who has been a Dementia Adviser at the Alzheimer's Society for nine years - stresses how important it is to talk about the illness, and urges anybody who is concerned to seek help.

Today (23rd May), between 2-3pm, helpline adviser Sandra Hillier will be joining this thread to answer any questions you have about caring for someone with dementia. Do post them below.

Rachael Doeg

Dementia Adviser, Alzheimer's Society

Posted on: Tue 20-May-14 11:46:22

(38 comments )

Lead photo

There are around 800,000 people in the UK with dementia

If I had a pound for each time a carer said to me "if only I knew then what I know now", I'd be a rich woman. But sadly, this has often been after many difficult years of struggling alone. Their advice to other people worried about themselves or their loved ones would undoubtedly be: get help early.

Although public awareness of dementia is increasing, knowing who to turn to for help can often be difficult. It isn't easy to sit down with the person you're worried about and have that conversation, especially when often, your concerns are dismissed. But – as I've learnt in my role as a Dementia Advisor in Kingston - brushing things under the carpet can only continue for so long.

It's my job is to support people with dementia and the people caring for them. Consultants, GPs, social workers and pharmacists can all refer into the Dementia Adviser service, and people can also self-refer. My focus is on supporting people with dementia from the point of diagnosis onwards, but we also have Dementia Support Workers, who provide support to carers and family members. This may be through one-to-one home visits, or by running peer support groups where carers get together on a regular basis to talk about their experiences.

Everybody has questions: ‘when is the right time to take over when I see my husband struggling?’ or ‘what should I say when mum is asking to go home?’ or ‘why doesn't Dad want to do anything any more - he always used to be so active?’ – and of course there's no one right answer. But talking these day-to-day challenges through with people who are in the same boat, swapping advice and anecdotes, can be a real lifeline.

Everybody has questions: ‘when is the right time to take over when I see my husband struggling?' or ‘what should I say when mum is asking to go home?' – and of course there's no one right answer. But talking these day-to-day challenges through with people who are in the same boat, swapping advice and anecdotes, can be a real lifeline.


Carers are given a chance to speak openly about how dementia is affecting them. People share tips on how they cope or talk about how they are struggling, and friendships are formed. We offer advice on coping strategies and help people to understand why their loved ones may be behaving in certain ways. Understanding the illness is hugely important in accepting the changes that are happening and helping carers to cope.

When Kim's father, Derek, was diagnosed with dementia, knowing there was information out there - to access when she felt ready - was comforting: “My son Josh was quite young, and I worried how I'd cope with Dad's illness and looking after him, as well as how mum would cope… knowing where you can go for information is really important", she said.

Support groups aren't for everybody, though – some are unable to leave the person they care for alone, and some people aren't close to one. Especially for people living in rural areas, a lack of access to support services may prevent them from getting together with others. If you find yourself in this situation, do – please – still contact us. Advisers and support workers can make regular home visits, and in some areas befriending services are available.

Talking Point, our online forum, can also be a vital source of support for people who cannot access other services. As with our support groups, it connects people affected by dementia and provides a wealth of information, advice and emotional support, at any time of the day or night. We also run dementia cafés, which people with dementia and carers attend together, and popular Singing for the Brain groups which can be wonderfully uplifting and tap into long-lost memories. Many carers are amazed when they see the person they care for singing along and remembering words to songs.

People approach Alzheimer's Society for all kinds of reasons. If you do have concerns or need information about any aspect of dementia, even if it is to find out what dementia is, please, please get in touch. The earlier you have access to the right information, the easier it will be to understand dementia and to provide the right support to people.

The Dementia Advisor service is available across England, Wales and Northern Ireland – so if you think you could benefit from what you read here, the best thing to do is contact your local Alzheimer's Society office and find out how we can help you.

By Rachael Doeg

Twitter: @alzheimerssoc

zebarella Tue 20-May-14 14:08:25

A very well written piece Rachael. Dementia is a cruel illness not just for the person with it but for there friends and family too. More awareness needs to happen so people who suffer and their carers and family aren't alone.

CMOTDibbler Tue 20-May-14 14:11:50

My mum has dementia, reasonably severely now but its hard to tell as her speech and language is very severely affected so its hard sometimes to know if she doesn't know things or people, or just can't talk about it.

She and dad live in a small country town, which seems to be a black spot for provision. Their Dementia Support worker has been amazing though, and organised an AgeUK befriender to give dad a bit of a break (he's 79 and very frail himself). Alas, no dementia cafes or groups accessible to them though, and thats what dad needs most.

The people I find who want to talk least about dementia though are my friends sad. No one wants to think that it could happen to their parents soon, and few have experience of balancing ft work, a small child, and caring from a distance. Mumsnet has been a fantastic support for me - I'm a Talking Point member, but thats more populated by people who aren't caring for children and parents at the same time. The ladies on 'Elderly Parents' here know what its like

MissPod Tue 20-May-14 20:53:40

Where do I go to get help for my Mum who has been diagnosed with Dementia and my Dad is struggling day to day. The Memory Clinic offer support via a day centre, but we cannot get her there, as she says its not for her. What can I do to take the next steps to integrate her into some sort of routine either someone coming to the house or someone helping us to get her out of the house. All feedback will be greatly appreciated.
Thanks

FrontForward Tue 20-May-14 22:10:42

I was interested to read this. My mum has dementia. I can't tell how advanced it is but suspect early...but also wonder if I've lost all perspective as the condition has crept up.

My dad is struggling and I think developing depression. She won't go out anymore and doesn't like him to. She is verbally very critical and dismissive of him, yet needs him. It doesn't seem as if she hears anything anyone says. She looks surprised when anyone speaks to her and then just resumes talking as if they've not spoken. She talks endlessly and about nothing, no specifics and nothing current...usually repeated and pauses as she loses track of what she was talking about

Sorry to pour this out but I'm finding it all very hard yet I don't think she's that advanced in terms of dementia.

Neither parent will access any help although my dad has tried. It sounds as if the GP is annoyed with my mum because of her prolonged speeches which say nothing and frequent visits

I feel like I've lost her and I fear for my Dad

Isabeller Wed 21-May-14 10:16:18

CMOT I'm soon to find out whether it's possible to look after DPs Mum, who has advanced vascular dementia, and DS 6 months (4 corrected) at the same time. DP will be there too and it's just 4 days thankfully. Any advice much appreciated!

I was one of DPs mums rota of live in carers before maternity leave so I'm very familiar with her situation although of course there has been some change since I was last on duty.

Isabeller Wed 21-May-14 10:28:32

Miss Pod DPs Mum tried a daycentre a few years ago and felt very out of place. She refused to go back at that time but later when her dementia had advanced she was actually happier in general, less shy and gave it another try. She has now been going 3 days a weeks for years and loves it and they love her. It is a completely essential part of the plan to keep her at home.

Immediately after diagnosis she needed some support but not 24 hours a day. She was able to do things like making a power of attorney and making her wishes clear. It was challenging but the family rallied round and there was more happiness than sadness. We were able to take her out to places she loved and enjoy a couple of holidays.

Then there was a period of perhaps a year when she still had some awareness of her illness and was very distressed at times, often about 'unreal' things - she might have been hallucinating sometimes - often very distressed about where her parents were. It was tough on all of us and very difficult to get through but it did pass. She was also prescribed some useful medication to help calm her down when very distressed (still helpful occasionally). We tried all sorts of things to cope and somehow just made it through to calmer waters.

Good luck finding help and advice. Talking point has been a lifeline!

CMOTDibbler Wed 21-May-14 11:05:57

Isabeller - I think its very different being a carer for someone as yourself, and trying to do that while thinking about your baby at the same time.
It was apparent my mum had issues when ds was still a baby, and so we haven't been able to leave him with her unsupervised since then - which is pretty hard to have to pick them up all the time and take the baby with you to the kitchen when at home they'd have been happy on the mat/in their moses basket etc.

We have additional issues in that my parents home is ultra unsuitable, so ds couldn't be put on the floor due to medications left around.

Mum hates the day centre and refuses to go. Shes never been one for any sort of group socialisation though.

MissPod - the AgeUk befriender has been great for my mum, and will be trying to integrate her into the day centre by being there with her having established the relationship

LucySMumsnet (MNHQ) Wed 21-May-14 11:45:30

Thank you all for sharing your thoughts, and we're sorry so many of you are going through this.

Just to let you all know, we've got some more info on caring for someone with dementia here, which you might find useful, and we've also launched a new Talk topic here.

Rosa Thu 22-May-14 06:30:38

Thank you for this . I posted on the other thread . I need to find out more about support workers anybody who can help the carer - even giving them a break once a week . memory clinics are helping but the carer has to stay near and can't just go and have a few hours 'alone'. Its a horrible disease and i agree 100% more needs to be done and people need to be made more aware.

LucySMumsnet (MNHQ) Thu 22-May-14 15:00:43

Hi everyone,

Sandra Hiller, who is a helpline adviser for the Alzheimer's Society, is going to join this thread tomorrow (23rd May) between 2-3pm. Do post any questions you have about caring for loved ones with dementia here, and she'll do her best to answer them all.

Somerset1972 Fri 23-May-14 09:52:35

My nanna has dementia, we can't do anything to help her though, mention it and she goes mad!! She's in complete denial what makes it worse is my grandad has terminal cancer, he is the mind and she is the body, I'm so scared what will happen when he's gone, I just wish she would admit she has it as there is medication that could possibly help!

justonecube Fri 23-May-14 10:14:56

When you see a parent getting forgetful, how can you tell whether it's just a symptom of getting old, or the beginnings of dementia? In the early stages, is there anything that you can do to slow the onset? I know staying mentally active is supposed to help... but is this the case even if you fear it's already taken hold?

TheSarcasticFringehead Fri 23-May-14 10:34:40

My grandmother has Alzheimer's (have POA). She is going for a swallowing assessment with a SALT and so on- I never knew it could affect swallowing until a bit ago, but now I'm worrying about aspiration pneumonia and stuff like that, I had a very basic idea of Alzheimer's and then we were kind of thrown into the deep end. She has PTSD and very small things (to us) are triggering her as well, hoarding, accusing others of stealing, she won't tell, will tell us we have to get away (for our own good). It's stripping her of her happy memories and putting her back into her own personal hell. Dementia is shit (understatement of the year).

pinkballoon19 Fri 23-May-14 10:48:30

My dad has Alzheimer's and as it's getting worse, I'm worried about how to explain what's happening to him to my children (5 and 7 yr old). Especially if he stops recognising them. I don't want them to be upset at him. Do you have any advice for how to talk to young children about this? thanks

UpOverAndOut Fri 23-May-14 12:35:41

Thank you for this post and for coming to answer questions. How easy is it to get in home care setup? And who assesses it?

dementedgirl Fri 23-May-14 12:49:05

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

TigerTrumpet Fri 23-May-14 13:26:05

Justonecube and Somerset DH and I are in a similar boat with regards to his mum, who has family history of vascular dementia. MIL is quite a character, so we're struggling to work out what is part of her personality and what should be cause for concern. I know that getting help early can really make a difference longer term, but it's hard when changes in her behaviour and personality happen in slow increments over a period of time. She's also very invested in her role as the family matriarch and as a retired nurse, so doesn't take kindly to anyone she thinks is trying to know better than her. I'll be watching this discussion with interest, thank you to everyone who's involved thanks.

LucySMumsnet (MNHQ) Fri 23-May-14 14:00:57

Thanks everyone for your questions, Sandra should be joining us any minute now, so I will handover to her...

SandraHillier Fri 23-May-14 14:02:15

Hello Lucy and Hello Mumsnet. Thank you for having me here today. Also I see you have been quite busy posting your messages. I will try to address as much as we can in the next hour.

SandraHillier Fri 23-May-14 14:05:14

Hello Mumsnet just testing you can see my message ok.

SandraHillier Fri 23-May-14 14:06:24

Please send your messages whilst I am live. I will in the meantime try to address as many queries already posted.

SandraHillier Fri 23-May-14 14:09:02

pinkballoon19

My dad has Alzheimer's and as it's getting worse, I'm worried about how to explain what's happening to him to my children (5 and 7 yr old). Especially if he stops recognising them. I don't want them to be upset at him. Do you have any advice for how to talk to young children about this? thanks

I will pick up on this post first. I would recommend introducing this subject to your children by maybe reading an age appropriate book on the subject to them. There are numerous publications on this subject now. Our library can help you source the most appropriate book. Please contact them on this number 0845 130 2545

SandraHillier Fri 23-May-14 14:13:35

TheSarcasticFringehead

My grandmother has Alzheimer's (have POA). She is going for a swallowing assessment with a SALT and so on- I never knew it could affect swallowing until a bit ago, but now I'm worrying about aspiration pneumonia and stuff like that, I had a very basic idea of Alzheimer's and then we were kind of thrown into the deep end. She has PTSD and very small things (to us) are triggering her as well, hoarding, accusing others of stealing, she won't tell, will tell us we have to get away (for our own good). It's stripping her of her happy memories and putting her back into her own personal hell. Dementia is shit (understatement of the year).

Hello. I am sorry to hear about your Grandmother and the affect the latter stages of your Grandmother's dementia are having on her. Everyones journey with dementia is different and it can be really difficult to witness someone you love go through this and experience them being stripped of their personality. That is why it is important getting as much support as possible. From either one of our local services or checking into Talking Point (our own online Forum) You are also welcome to discuss this matter further with us on the helpline. Details below:
Helpline open Monday-Friday 9.00am-5pm and Saturday-Sunday 10.00am-4pm
Tel: 0300 2221122
www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200365

CMOTDibbler Fri 23-May-14 14:14:10

Hi Sandra, its great to have you here. The AS have been amazing for my parents (well, my dad really as mum has no insight at all to her dementia), and their sole source of support.

My mum has lost interest in just about everything now, and her language issues mean that she can't talk about old photos, talk about the past, music means nothing (tried singing, and things she's loved in the past get turned off). Its very long days for my dad (who is 79, very frail, and not firing on all cylinders himself) to fill as the only thing she likes is Dads Army over and over.
Any suggestions as to something she might take to? He does park her in the garden to 'weed' on nicer days, but after 'the chair threw her in the pond' even thats not so popular.

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