• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

10 Action points

Joncoh

Registered User
Dec 1, 2012
3
I am a member of a small dementia support group in Edgware, London that was set up by my sister and her friends after my mother died from dementia in 2012. Since then we have met several times and have made several attempts to try and get our concerns heard. At our recent meeting this evening we discussed the idea of putting forward 10 Action points that would help to change the way that Dementia is dealt with currently. We were thinking that we could possibly put these ideas forward on a forum like change.org to get the ideas into an arena where our message can be taken seriously. Below is the first draft of our action points. We are not journalists or experienced campaigners so we would like to get people's advice on what they think would be the most effective points, what they would add in, and what people think is the best way to push these ideas forward.



1. counselling for careers at point of diagnoses and each stage.
2. Alzheimer's recognised as a disease that needs the right funding to find a cure.
3. Designated member of staff in hospital that can stay with patient from start till finish.
4. Dementia wards in all hospitals.
5. A Contact in hospital for careers at all times.
6. All nurses on wards should be trained in Alzheimer's.
7. Patients should be moved nearer to the careers if they have to move hospitals.
8. Extra help needed in the home if Alzheimer's sufferer stays at home.
9.If a person with dementia stays at home an outreach person for the career to talk to at the end of telephone line that could also phone carer every so often.
10. Available literature to help friends and family cope with the illness. Someone to set up a meeting with family and friends so that people know how to talk about the issue with the people closest to them.

These points are indeed rough at this point. We are a little support group- has anyone got any points they would like to add?

Are there any other support groups like this that would like to be in touch with us?

Yours
Jonathan Cohen
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
On the first point you mention we did have counselling through The Admiral Nursing Service Very few mental heath trusts or local authorities funded the service which made it patchy throughout the country. I got wonderful support as a carer through this Service but my LA had to stop the financial support because of the cuts.
Now with the swinging cuts in mental health and local authorities the Admiral Nursing Service is almost extinct.

Most areas have very good dementia support groups who meet regularly and your contributions would be most welcome I'm sure

Have you thought about joining your local Healthwatch? Local Healthwatch do a wonderful job pushing forward many of the points you mention in your post and have statutory rights which give them teeth in representing the various groups to the CCG, and Hospital Trusts in their area.

xxTina T
 
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Joncoh

Registered User
Dec 1, 2012
3
Thank you. A very helpful response. I will definitely look into health watch
On the first point you mention we did have counselling through The Admiral Nursing Service Very few mental heath trusts or local authorities funded the service which made it patchy throughout the country. I got wonderful support as a carer through this Service but my LA had to stop the financial support because of the cuts.
Now with the swinging cuts in mental health and local authorities the Admiral Nursing Service is almost extinct.

Most areas have very good dementia support groups who meet regularly and your contributions would be most welcome I'm sure

Have you thought about joining your local Healthwatch? Local Healthwatch do a wonderful job pushing forward many of the points you mention in your post and have statutory rights which give them teeth in representing the various groups to the CCG, and Hospital Trusts in their area.

xxTina T
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Yours sounds a very helpful initiative.

There are some hospitals, GP surgeries and local authorities that do dementia care better than others. Perhaps TP members in good areas could PM you to say what was good in their hospital / GP surgery / local authority and how it worked? Perhaps you could include in your Action Points the importing of any good practices not available locally?
 

Joncoh

Registered User
Dec 1, 2012
3
Thank you for your response. Very helpful
Yours sounds a very helpful initiative.

There are some hospitals, GP surgeries and local authorities that do dementia care better than others. Perhaps TP members in good areas could PM you to say what was good in their hospital / GP surgery / local authority and how it worked? Perhaps you could include in your Action Points the importing of any good practices not available locally?