Information: where would you like it?

[jje]

I currently work for the society and I am trying to reach out to people with dementia and their family and friends to help them access any support they may like.

However uptake is very slow.

If you wanted support, information or initial contact with the society where would you ideally like to find it? And where did you first come accross the society?

Any suggestions would be most welcome - thank you.

Jo x

 

[Chemmy]

Hi Jo

The GP's surgery.

This is usually the first point of contact with professionals and I've felt for a long time that families could be saved a lot of hassle and distress if all the main information was available there.

In my case (and I'm going back to 2003) I became a distance carer for my mum when Dad died suddenly; I saw her GP who said casually - "she'll probably end up in a CH" and that was it. I didn't have a clue where to start; the surgery couldn't even give me an address for social services as it had moved and I was unfamiliar with the area.

It wasn't until Mum ended up in hospital a year later that I was put in touch with the Society and this made all the difference. It might have made a difference to my dad too if he'd had more support right at the beginning from the GP...but that's another story and probably not one for the forum.

 

[jan.s]

Hi Jo

I received no information about the Society until I found it on the internet. I then contacted my local society, who failed to come back to me. Just after my husband went into a CH, they contacted me!

As Chemmy says, from the GP or the consultant. I know I would have handled things differently if I hadn't felt so alone. I called the helpline for help when I was desperate, but it was engaged!!

Sorry, don't mean to rant, because I know you do a good job, but I seemed to slip through the net.

Jan

 

[jje]

Thanks

Thank you that's really helpful.

I am currently working part-time as a dementia adviser in Solihull and I am targetting GP surgeries as a point of contact and also hoping to get referrals from them.

It is a new pilot for the area and we are hopeful that GP surgeries are the way forward.

Take up so far does seem to be a little slow but I think that if several people comment on here saying that they think GP surgeries and GPs are a good access point then I can show this thread to the staff at surgeries to encourage them to recognise the need for referring on and show them that this is really what people want.

 

[SisterAct]

I also found it on the Internet and informed Dads GP about it as well as all his carers and Community Nurses.
When we first joined I was just an observer as we hit the ground running caring for Dad 24/7 between my Sister and I. Must admit I was worried about posting anything at all because of the backlash we were getting from Dad (Due to the Dementia I might add) we felt we couldn't post incase we were judged wrongly.

This is DEFINATELY not the case....we have been so grateful for the advice we have been given...Thank you. Some of you will never know how you have impacted on our growing caring skills and sanity. As I often say to my Grand children " it's good to share"
Polly x

 

[kingmidas1962]

For immediate family (spouses, partners, family etc) I think the information about the Society and what they do should come with the first diagnosis of Alzheimers or dementia. When my dad was diagnosed with Picks disease there was a very small leaflet in with the letter from the Hospital. It was a case of 'oh, right - well we've found out what it is ... read this'. There was no talking support of any kind, and no arena in which to air any questions.

It would also be lovely, if resources permitted, for the sufferer and family to be asked if they would like to be contacted at the time of diagnosis - as a lot of people can't interpret the highly technical information they are given, and have no idea what the diagnosis will mean for them. Usually it is quite a shocking time (it was for us, although we had a pretty good idea from dads symptoms it was either Alzheimers, Dementia or Parkinsons)

What I have found is that my mum (my dad is a dementia sufferer) finds it extremely hard to find relevant phone numbers etc - these days (I actually sound like my mum as I say that!) its very hard to get ANY information if you don't have internet access, and a lot of elderly people don't have computers. I don't really know what the answer is to that - apart from as I said, to be provided with the Society's details in hard copy at the time of the diagnosis, and followed up with a phone call afterwards.

Having said all that (and reading it back, it sounds like a massive moaning session) I have found the website invaluable, and TP in particular has saved my sanity a couple of times!

 

[winda]

Hi Jo

I received no information about the Society until I found it on the internet. I then contacted my local society, who failed to come back to me. Just after my husband went into a CH, they contacted me!

As Chemmy says, from the GP or the consultant. I know I would have handled things differently if I hadn't felt so alone. I called the helpline for help when I was desperate, but it was engaged!!

Sorry, don't mean to rant, because I know you do a good job, but I seemed to slip through the net.

Jan

Hi Jo,

I had a similar experience to Jan - no reply when I rang the helpline - when I was feeling desperate.

My first help was from the GP and then the consultant.

I found this website myself.
Joining the forum has been a lifeline.

 

[Saffie]

This is usually the first point of contact with professionals and I've felt for a long time that families could be saved a lot of hassle and distress if all the main information was available there.

We have a Patient Help and Information room in our Health Centre, which I actually manage as a volunteer and it is staffed every morning by other volunteers. The idea is that if a person is newly diagnosed, with anything, the Dr suggests they come to see us and we have a stack of information which I have built up over the 12 years I've been there. We had a lot of information from the A.S. before Dave was diagnosed but have a lot more now!

However, we have had to diversify our help now as so many people now just look things up on the internet rather than coming to us.

 

[Izzy]

My information regarding Alzheimer Scotland came from having a carer's assessment. Until then I had no information at all.

I found TP by accident through google.

I have put TP leaflets in our local Memory Clinic and in the local Alzheimer's Scotland Resource Centre. I intend to get more to put in the GP surgery.

 

[PeggySmith]

I'd already found this website by the time MIL was referred to the memory clinic, but I agree lots of older (and some younger) people wouldn't have that option.

From realising something was wrong and getting a diagnosis took eight and a half months which is quite a long time BUT the nurse we saw at the clinic referred us to an Alzheimer's outreach worker who contacted me and we're meeting next week.

While it seems a good idea to get information into GP surgeries, I think that some people need actual physical contact and, in my opinion, some professionals are quite scared of dementia and prefer not to discuss it (we've suffered terribly from "elephant in the room" syndrome)

For what it's worth, please remember that a large percentage of the adult population have literacy levels below that of an average 14 year old which makes printed material somewhat inaccessible to them.

 

[2jays]

I found this site through google search.
My main moan, as mum is "self funding" is that I was/am expected to be self finding outer - which if you don't know the questions to ask (and the right way to ask them) you don't get answers. A lot of things I know now, would have been so helpful to lessen the stress when mum was first diagnosed. The other issue I had was that it took so long to diagnose "officially" and not being believed and being treated like a neurotic daughter.

Leaflets and/or posters for Doctors surgery. Chemist shops. Local paper shop. Local paper Hairdressers. Supermarket.

 

[Chemmy]

A simple list of organisations/agencies and their local contact details would be a good start

 

[CollegeGirl]

In addition to all the suggestions above (obviously as much info from the GP as possible before or after official diagnosis) but also how about leaflets in libraries, community centres, bingo halls? Anywhere where groups of people get together.

Adverts on the radio, on TV, in newspapers and magazines, sides of buses, etc.

I found the society by being given the name from my mam's GP and googling it. My dad would never have found as much info as I have been able to on the computer. He was given the name of the society and a telephone number, but nothing much came of his contact with them. Of course this might have been as much to do with my dad as the society. The website and TP have been a mine of support and information.

 

[Chemmy]

He was given the name of the society and a telephone number, but nothing much came of his contact with them. .

My initial contact with the Society (2003) was to the branch local to me by phone and I must say, I didn't find it very helpful; in hindsight, this was probably because I didn't know what questions to ask

My second contact (2004) was a face to face meeting with the rep from the branch local to mum and that was a fantastic help.

I only found this forum (late 2011) because I was Googling for ideas to entertain Mum in her room in the CH, so even though I've been to local AS seminars (2010) as a would-be volunteer, I don't recall Talking Point ever being mentioned.

 

[bunnies]

I think a simple ad in the local paper would have helped. I didn't accompany my relative to the GP surgery in the early days, when we most needed some other help and input of this kind, so I wouldn't have picked it up there, and my aunt wouldn't have picked it up there because she was in denial..

 

[NeverGiveUp]

I found out about AS by Googling dementia, the fact sheets were useful and I graduated to using American web sites and reading dementia related books.

A couple of years ago we needed serious help with the hospital giving mum anti psychotics against our wishes to 'calm her down' , it was the week after the AS published their report about the dangers of anti- psychotics, I phoned the national help line and was told that anti psychotics could be very useful things with dementia . I phoned the local branch who did try to see mum on the ward when they were there but she was asleep (drugged?), they couldn't go back as they had an important coffee morning to arrange. I made a lot of noise about the drugs, the hospital appointed IMCAs, the AS refused to get involved when we could have done with a lot of knowledgable support.

I was then told that, when I get to the end of life's long road, I would be able to look back and know I had done the right thing. We needed support then and there, we didn't get it so we dealt with it as best we could, it was Hell. It could have been a lot easier. We got them to stop drugging her.

After we got mum out of hospital I tried to get more help to manage mum's behaviour, I was told about Dementia Cafe's and lunch groups as a nice break, we wanted to be as far away from dementia as possible not in the middle of it, we try to keep mum in a 'normal' environment not one of illness.

I would say that the web site gets 10/10, local group gets nil points as they say on Eurovision.

If I could sum up my opinion of the local group in 3 words - wet, paper & bag.

 

[jenniferpa]

Just to reiterate: this is a question about where might be the best place for people to obtain information locally.

I would think the local GP surgery and perhaps, local libraries.

 

[NeverGiveUp]

The quality of information has to be good otherwise word of mouth will ensure that no-one will bother picking up leaflets wherever they are situated. I see the leaflets in all sorts of places, they don't offer me sessions where i can learn more they just want me to join up, i don't bother looking any more.

 

[jje]

thank you

Thank you everyone for your imput - that is really helpful.

I am sorry so many people have had trouble getting through to the helpline. I shall feed that on to someone.

One more question: do you think having someone who knows about alzheimer's society services (e.g. a dementia support worker, a dementia adviser or an information officer) in a GP's surgery would be a good way for anyone with a recent diagnosis to find support?

 

[CeliaW]

I work as Communications Co-ordinator for the local CVS (Council for Voluntary Services) and have a fairly good contact with local Alzheimer's society amongst the many other groups. We provide information to many people as individuals as well as to not for profit organisations who we support to develop etc and we have considerable contact with the local statutory services as well. Most towns will have similar - often linked with the Volunteer Recruitment Centre.

Can I suggest several things?

1) Make up small packs with details of local contacts, meetings, main social service contacts and also about this website and fact sheets and Talking Point. These can then go to your CVS and other groups.

2) Many towns have an "older persons forum" or similar who would welcome information they can pass on and/ or talks to members.

3) Leave packs with local council - especially with officers who deal with residential accommodation who can pass them on not just to residents but to their family. Ditto for Day Centres

4) Look into becoming a member of your local CVS - its usually free or a nominal charge and then you can work with them in putting items in their newsletter / on their website etc - our information goes to 300 plus organisations plus various statutory bodies.

If you would like to ask anything or comment on above then feel free to inbox me.

Regards,

Celia