PEOPLE WITH DOWN’S SYNDROME AND DEMENTIA FACE DISCRIMINATION

06/09/2004

The Down’s Syndrome Association is challenging health and care professionals to stop discriminating against the forty per cent of people with Down’s syndrome who will develop Alzheimer’s disease in later life.

PEOPLE WITH DOWN’S SYNDROME AND DEMENTIA FACE DISCRIMINATION reports the Down’s Syndrome Association as it calls for urgent improvements in care.

 

The Down’s Syndrome Association is challenging health and care professionals to stop discriminating against the forty per cent of people with Down’s syndrome who will develop Alzheimer’s disease in later life. 

 

Lack of understanding means that many health and care professionals frequently overlook the possibility of dementia in middle-aged people with Down’s syndrome, dismissing the distressing symptoms as ‘just part of the learning disability’.   Many are also unaware of practical strategies to help sufferers get the most out of life.  Others cite the lack of dementia diagnosis tools suitable for use in people with learning disabilities as the reason for delayed diagnosis, preventing patients from receiving the benefit of existing drug treatments which are only effective in the earlier stages of the condition. 

 

The problem is further compounded by current NICE guidelines blocking the prescription of drugs such as Aricept to anyone not complying with strict criteria that do not allow for the co-existence of a learning disability.  The Down’s Syndrome Association has received reports that some GPs refuse to prescribe, citing the NICE guidelines as the reason but suggesting that reluctance to spend limited drug budgets on people with Down’s syndrome may be the real motivation.   The latest developments on new NICE guidelines for dementia care acknowledge the problem and are set to improve provision for people with Down’s syndrome, but they are not expected to be published until the end of 2006.

 

Nikki Lewis, whose brother Andrew died from Dementia said: 

 

“My battle to have Aricept prescribed for Andrew was long and hard. It took many months of perseverance before Andrew was finally given the prescription. Sadly, as we expected, the medication only sustained the improvement for a limited period especially in view of the late start to the drug. Nine months later it was the opinion of the professionals that the drug was no longer holding back the dementia and the Aricept was withdrawn.

 

 

“Not all carers can be as strong as I was and fight every step of the way.  We should not have to fight to receive the same treatment for people with Down’s syndrome and dementia – it should be an automatic right.”

 

 

The urgent need for change is heightened by the otherwise welcome rise in the number of people with Down’s syndrome who are both living longer and living more independently, creating an even higher future demand for dementia care that is already failing current users.   

 

Big Lottery Funding has enabled the completion of the current Cambridge research project carried out by Professor Tony Holland and his team and also the launch of a new differentiated diagnostic tool now available from Cambridge University Press. 

 

This Autumn, the Down’s Syndrome Association is holding a series of conferences and training sessions on dementia for professionals and carers, as well as producing new information materials on Down’s syndrome, ageing and dementia.   Funding is also being sought for ongoing training provision and further research into Down’s syndrome and Alzheimer’s disease. 

 

1. ends –

 

Attached:

1. Report on latest Cambridge research on Down’s syndrome and dementia
2. Down’s Syndrome Association strategies to improve dementia care
3. Down’s syndrome and dementia – key facts
4. Language and terminology – guidance on writing about Down’s syndrome

 

Editors’ notes:

The Down’s Syndrome Association is the UK’s main charity dealing with all issues relating to living with Down’s syndrome.  It provides information and support to those with Down’s syndrome, their families carers and those with a professional interest as well as aiming to improve understanding and championing the rights of people with the condition.

 

For further information please contact:   Amanda Duffy at The Forster Company or visit the Press Office of the Down’s Syndrome Association website:  www.downs-syndrome.org.uk. 

 

 

NEW RESEARCH FROM CAMBRIDGEUNIVERSITY

 

The DSA is supporting the work of Professor Tony Holland and his team at Cambridge University, who are carrying out a study of Alzheimer’s disease (AD) and ageing in people with Down’s syndrome.  The study, funded by the Community Fund (now the Big Lottery), has given rise to the following findings.  

 

Executive summary of study findings

• Although physical changes linked to dementia seem to occur in the brains of all people with Down’s syndrome it is not true – as previously thought – that dementia is the inevitable result.
• People with Down’s syndrome are likely to show general signs of premature ageing such as balding, wrinkles and grey hair in line with a shorter life expectancy than average.
• There is some evidence that dementia presents differently in people with DS, i.e. that personality changes may be the first noticeable signs in comparison with the general population where memory loss tends to occur first.   Non-awareness of these differences presents a barrier to early diagnosis by health professionals. 
• Also, these early clues may give rise to justification for regular screening in those suspected to be more vulnerable to developing full-blown dementia.  
• People with Down’s syndrome should be tested for signs of dementia using appropriately modified testing methods such as those developed through the study. 
• The study may also inform our understanding of dementia overall, with implications for the wider population. 

 

 

Peer Review

The first of a series of papers detailing the study findings appears in the September issue of the ‘Journal of Intellectual Disability Research’.  (A copy of the article   is available on request). 

 

Development of new diagnostic tool

A part of the research project has been the development of a differentiated diagnostic tool for people with learning disabilities.  Based on the existing CAMDEX material used by psychiatrists to assess the development of dementia in the general population, the modified CAMDEX has been proved as a valid and reliable tool for the diagnosis of dementia in people with Down’s syndrome. ( A copy of the revised CAMDEX is available on request). 

 

 

Professor Tony Holland is available for comment.  Please call:  or . 

 

 

 

DOWN’S SYNDROME ASSOCIATION – improving dementia care

 

The DSA is the main UK charity carrying out the following initiatives to improve care for people with Down’s syndrome and dementia.  It is currently carrying out the following initiatives to improve care for the ageing population of people with Down’s syndrome. 

 

Conferences – a series of conferences for health professionals, care professionals and the families of older people with Down’s syndrome is being staged including:

 

13^th October - Dementia and Down’s syndrome– one day conference  - Teddington.

10^th November – Dementia and Down’s syndrome – one day conference - Bristol

 

Training – the DSA has a network of regional development officers available to supply bespoke training to groups of health and care professionals on providing care for people with Down’s syndrome and dementia. 

 

Information – this Autumn, the DSA is launching two new publications aimed at professional carers and families, one on ageing and Down’s syndrome, the second specifically on caring for someone with Down’s syndrome and dementia.  It also maintains and contributes to a website aimed specifically at health professionals:  www.intellectualdisability.info. 

 

Campaigning - Health Alert is an ongoing DSA campaign aiming to ensure all people with Down’s syndrome get equal access to health care.  DSA research suggests that people with Down’s syndrome frequently experience difficulty in getting health care appropriate to their individual needs.  In a 1999 study, ‘He’ll never join the army’ 28% of respondents reported discrimination from health professionals .  The DSA believes that this discrimination arises largely from a lack of understanding of the condition coupled with an inability to separate the health needs of an individual from the fact that they have Down’s syndrome.

 

A full copy of the ‘He’ll never join the army’ report is available on the Down’s Syndrome Association website: 

http://www.downs-syndrome.org.uk/DSA_lstCampaigns.aspx

 

For further information on the work of the Down’s Syndrome Association call:  or visit:  www.downs-syndrome.org.uk. 

 

 

KEY FACTS

 

Down’s syndrome and dementia

Dramatic improvements in life expectancy over the last fifty years, mean that people with Down’s syndrome now have a life expectancy of around 60 years plus.  In addition, a welcome move away from institutional care to semi-independent living means the erosion of life skills through dementia has more impact.  Both these factors mean effective dementia care is becoming increasingly important. 

The incidence of dementia in people with Down’s syndrome follows a similar pattern to the general population except that it occurs some thirty or forty years sooner.   That is to say, approximately 40% of people with Down’s syndrome in their 50s will show some evidence of dementia in comparison to similar figures amongst groups of people from the general population in their 80s.

Alzheimer’s disease has been linked with a gene present on chromosome 21.   This is the chromosome that people with Down’s syndrome have an extra copy of i.e. three as opposed to a pair.  However, new research shows that It is not –as previously thought – inevitable that people with Down’s syndrome will develop dementia.

People with Down’s syndrome and Dementia would benefit from an early diagnosis of Dementia so that they can be given optimal medical and social care.

Although no large trials have been carried out on the effectiveness of drug treatments (e.g. Aricept) in people with Down’s syndrome and dementia, smaller trials have indicated that drug treatments can be of benefit in the early stages of the disease.   Further research would be beneficial.

 

 

 

Down’s syndrome

• Two babies with Down’s syndrome are born every day in the  UK. Around one in every 1,000 babies born will have Down’s syndrome.
• There are 60,000 people in the  UK with the condition.
• Although the individual chance of a baby having Down’s syndrome is higher for older mothers, more babies with Down’s syndrome are born to younger women, reflecting the higher birth rate in this group.
• Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. It occurs by chance at conception and is irreversible.
• Down’s syndrome is not a disease. People with Down’s syndrome are not ill and do not “suffer” from the condition.
• All people with the syndrome will have a varying degree of learning difficulty. However, the majority of people with Down’s syndrome will walk and talk and many will read and write, go to ordinary schools and lead fulfilling, semi-independent lives.
• Today, with the right support, people with Down’s syndrome can enjoy a life of sixty years plus.

 

LANGUAGE AND TERMINOLOGY – guidelines on writing about Down’s syndrome

 

We rely on the media to speak about issues relating to Down’s syndrome in a way that is both factually accurate and inoffensive to the general public, including people with Down’s syndrome and their families.

We are sure you share our concerns so please take a minute to check that your copy is in line with the following language guidelines and that you are not perpetuating any myths about the condition.