Two cups of coffee or quality of life for people with Alzheimer’s disease?

EMBARGO: 00.01 27 JUNE 2006
To: News/Health Editors

Alzheimer Scotland will stand shoulder to shoulder with other dementia organisations in the UK today to fight against the National Institute of Clinical Excellence’s (NICE) decision that people with mild Alzheimer’s disease should no longer be prescribed cholinesterase inhibitor drug treatments.

NICE’s reasons are based on cost effectiveness, but with the price of the drugs per person per day costing around £2.50, Alzheimer Scotland argues that quality of life is being compromised for the price of two cups of coffee.

The charity is calling on Members of the Scottish Parliament to lobby the Scottish Executive Health Department in the hope that it will instruct NHS Quality Improvement Scotland (NHS QIS) to over-ride NICE’s decision and make treatment available to all.

Jim Jackson, Chief Executive of Alzheimer Scotland says, “NHS QIS should be drawing up a protocol on the use of drug treatments based on the recommendations of the Scottish Intercollegiate Guidelines Network (SIGN). The SIGN report ‘Management of Patients with Dementia’ recommends the use of cholinesterase inhibitors for people with all stages of Alzheimer’s disease due to the positive impact it has on their quality of life and the quality of life of their carers.”

He continues, “NICE’s decision is flawed because it does not consider the quality of life benefits that cholinesterase inhibitors can make to people with all stages of Alzheimer’s. Furthermore, they are the only treatment available to people who have received a diagnosis and to remove them risks undermining improvements in diagnostic services and the ability to diagnose early so that patients and their families can plan for the future.”

Edward Cleland from Edinburgh (75), who has Alzheimer’s disease says, “I was prescribed Aricept when I was first diagnosed with Alzheimer’s disease 18 months ago. Since then I have achieved consistent scores in my Mini Mental State Examination tests when an average person with Alzheimer’s disease not receiving treatment would be expected to decline by 2 points annually. Aricept is helping to maintain my memory and independence, which is hugely important to me and my wife Molly who is my primary carer. If NICE’s recommendations were adopted in Scotland I would be ineligible for treatment. This is absolutely ridiculous when I am living proof of how beneficial these treatments can be.”

NICE will be hearing oral evidence from appellants on 13th and 14th July and will therafter make a decision on whether to uphold the appeals or if its guidance will remain unchanged. Alzheimer Scotland will continue to place pressure on the Scottish Executive and NHS QIS to ensure that Scotland does not follow in the footsteps of this not so nice decision.

Jim Jackson, Chief Executive and Kate Fearnley, Policy Director are available for interview.

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

Briefing for Members of the Scottish Parliament: withdrawal of drug treatments for mild dementia

Contact details:

Sarah Bromley, Awareness Manager, tel 0131 243 1453, mob 07966 458 869, sbromley@alzscot.org
Jim Jackson, Chief Executive, tel 0131 243 1453, mob 07747 025 041, jjackson@alzscot.org
Kate Fearnley, Policy Director, tel 0131 243 1453, mob 07791 028 317, kfearnley@alzscot.org

Note for Editor:

Why NICE proposals should not be adopted in Scotland

• The NICE assessment does not capture the quality of life benefits for people with dementia. Quality of life benefits are so personal to the person and have been shown to be difficult to capture with standard assessment tools
• The NICE assessment does not give sufficient weight to the impact of the illness on the carers of people with dementia
• The Scottish Intercollegiate Guidelines Network (SIGN) guidelines ‘Management of patients with dementia’ recommended the use of these treatments. The SIGN Guidelines also recommend cholinesterase inhibitor treatment for people with severe Alzheimer’s disease. The NICE Final Appraisal Document fails to recommend memantine and does not consider cholinesterase inhibitors for this group of patients. Treatment for the later stages of Alzheimer’s disease has a very significant impact on the quality of life not only for the person with Alzheimer’s disease but also for the carer. Alzheimer Scotland believes that patients should be given access to treatments at this stage once again on the basis that the treatment will continue to be prescribed only where it is clearly of benefit
• NICE did not give sufficient attention to current clinical practice where these treatments are withdrawn from patients who do not or no longer benefit. NICE commissioned retrospective responder analyses which showed that discontinuing treatment when it was ineffective made these drugs cost effective. However, they rejected this evidence on grounds of possible sample bias. Alzheimer Scotland believes that this is important information and should not be ignored because it reflects clinical practice
• These are the only treatments available for early stage Alzheimer’s disease. Until they are superseded by new and better treatments they ought to be available for patients where it can be shown that they are benefiting from receiving them
• Withdrawal of the availability of these treatments for early stage Alzheimer’s disease will undermine the recent improvements in diagnostic services and the ability to diagnose the illness early so that patients and their families can plan for the future
• People will be reluctant to seek a diagnosis if they know that in the initial stage of the illness there is no treatment available
• The lack of drug treatments for people with early stage of Alzheimer’s disease will make it even more difficult for them to develop a positive approach to managing their symptoms and the knowledge that they have a degenerative illness
• Denial of these treatments will also undermine the principle of the NHS in Scotland that treatment should be based on patients clinical need and not their ability to pay. Those who can afford to do so will pay for these treatments increasing health inequality
• Scotland lags well behind England in healthy life expectancy. Offering people with
• Alzheimer’s disease these treatments is an opportunity to contribute to increasing the healthy life expectancy of some of the 10,000 people in Scotland with early stage Alzheimer’s disease.

Dementia affects approximately 64,000 people in Scotland.

• 34,640 have Alzheimer’s disease
• 10,400 have mild Alzheimer’s disease
• 14,600 have moderate Alzheimer;s disease

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.