Scottish carers let down by lack of dementia services

IMMEDIATE RELEASE
To: News/Health/Community Editors

Less than 30% of carers in Scotland who care for a loved one with dementia are satisfied with the level of care for the elderly, a survey carried out by Alzheimer Scotland and other Alzheimer associations across Europe has revealed.

‘Who Cares? The State of Dementia Care in Scotland’ explored the experiences of caring for a person with dementia by examining different aspects of caring at the point of diagnosis, during the progression of the condition and whether people with dementia and their carers had access to treatment.

First diagnosis

51% of the 334 Scottish respondents expressed dissatisfaction with the information that they received at the point of diagnosis. Only 37% were informed of available services and 65% did not receive information about the availability of dementia drugs, which can slow down the progress of Alzheimer’s disease. All carers expressed the need for more information at the point of diagnosis in particular legal and financial information that would help them plan for the future.

Current condition

The impact of caring on the life of a carer is enormous but often overlooked by health services and policy makers. 81% of carers for people in the later stages spent more than 10 hours a day caring for the person with dementia. Even in the early stages of the illness, 66% spent more than 10 hours a day caring. 99% of respondents stated that they had to cope with stressful symptoms such as no longer being able to leave the person with dementia alone, difficulties in showering and bathing and incontinence. 91% of respondents had to cope with severe behavioural symptoms such as aggression, personality changes and wandering.

Evaluation of services

‘Who Cares’ revealed a severe lack of basic support services for people with dementia and their carers. Day care was not available for 30% of people with dementia and 50% could not access home support. Despite 57% of carers believing that services should be funded publicly the majority were paying for these services themselves. Carers highlighted the lack of emotional support, training and counselling services available.

Alzheimer Scotland’s Chief Executive Jim Jackson says, “This survey has revealed major gaps in the provision of services for people with dementia and their carers throughout Scotland. Caring for a person with dementia can place huge emotional and physical strain on carers and this should be acknowldeged by providing them with the necessary information, support and training both at the point of diagnosis and as the illness progresses. Alzheimer Scotland will be calling on the Scottish Executive to develop plans for dementia that ensure that carers who want to continue caring for their loved ones receive the help and support that they need.”

Please give our Freephone 24hr Dementia Helpline telephone number: 0808 808 3000 and our website address: www.alzscot.org at the end of articles.

Contact details:

Sarah Bromley, PR & Marketing Manager, tel 0131 243 1453, mob 07904 624 696, sbromley@alzscot.org
Jim Jackson, Chief Executive, tel 0131 243 1453, mob 07747 025 041, jjackson@alzscot.org

Note for Editor:

• The Dementia Carer’s Survey and Report were developed by Alzheimer Europe in collaboration with H. Lundbeck A.S.
• The survey was carried out by the Alzheimer associations in France, Germany, Poland, Spain and Scotland.
• Questionnaires were distributed to a sample of carers belonging to Alzheimer Europe member associations in France, Germany, Poland, Scotland and Spain. 1,181 completed questionnaires were received from the countries: France (204), Germany (242), Poland (201), Scotland (334) and Spain (200).
• Fieldwork was conducted from November 2005 – January 2006

Alzheimer Scotland is Scotland’s foremost voluntary organisation working for people with dementia and their carers. It:

• speaks out for the rights and concerns of people with dementia and their carers;
• operates services on over 60 sites throughout Scotland providing practical services such as day, evening and weekend centres, home care and befriending and carers' support services;
• provides the 24 hour national freephone Dementia Helpline (0808 808 3000);
• provides the website www.alzscot.org;
• supports a network of over 40 carers' support groups;
• provides information to carers, professionals and people with dementia;
• publishes leaflets, booklets, reports and a quarterly newsletter keeping carers and professionals up-to-date
• has a research programme.