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
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