Dementia — Debate

Part of the debate – in the House of Lords at 12:20 pm on 25th June 2009.

Alert me about debates like this

Photo of Lord Rix Lord Rix Crossbench 12:20 pm, 25th June 2009

My Lords, I am glad to have the opportunity to speak today. I thank the Down's Syndrome Association for its briefing in advance of today's debate and of course the charity Mencap, of which I am the president. I also thank my noble friend Lady Murphy for introducing the debate, even though she once or twice frightened the life out of me with her statistics—I am now well into my 86th year.

I am delighted by the publication of the National Dementia Strategy and its wide-ranging aims of improved awareness, earlier diagnosis, intervention and a higher quality of care. This strategy is vital in light of the fact that people with learning disabilities have a significantly higher risk than the general population of developing dementia, at a much earlier age, particularly those with Down's syndrome, such as my daughter, who displayed distressing symptoms for some years before she died.

I am glad to say that the awareness of dementia in people with learning disabilities, particularly in adults with Down's syndrome, has increased significantly and is now well recognised in many parts of the country, with screening services either available or in development. However, I am concerned that there continues to be a mismatch between the services that are available and the ability of someone with learning disabilities who suffers from dementia to access them. In particular, delays in diagnosis are leaving people with a learning disability isolated. I would be interested to hear what plans the Minister has to help to speed up referrals to specialists so that the correct care and treatment can be made available as soon as possible.

I would like to take a moment to give a human face to our discussions today. Let me tell your Lordships about Sandra. She is 46, has Down's syndrome and was in supported living in the south of England. When she began to show signs of deterioration, despite being allocated support workers, she worsened to the point of remaining in bed, soiling sheets, crying and shunning contact before she was taken into residential care. A further 12 months passed before the question of dementia was raised and she was eventually assessed by a psychologist. That report has never been finished. The psychologist left the service and Sandra is now waiting again for another assessment to take place. In the mean time, there is no diagnosis, no treatment and, of course, further deterioration. I am absolutely appalled by this case. Sandra may or may not have dementia, but until she gets an assessment of her needs she will get no treatment.

The Government could take a number of simple measures to assist services to improve and to meet better the needs of people with a learning disability. First, a baseline should be established for every adult with Down's syndrome while they are healthy, as the detection of early signs of dementia relies on a good baseline. Secondly, assessment for dementia in any adult with learning disabilities should be readily available as soon as concerns have been raised. Thirdly, services might also consider prospective screening for dementia for adults with Down's syndrome, conducted at intervals, say, from the age of 40 or 50. I would be grateful for the Government's views, although it is very difficult to see how we can achieve improvements in assessment and diagnosis unless we invest in more resources.

The Government also need to recognise the increasing possibility that people with learning disabilities will be living in a range of accommodation: independently, with family, supported by other services such as social care or healthcare, or in residential care. It will be essential to ensure that services such as those for dementia reach the target audience.

The Government have said that they intend to ensure that all health and social care staff involved in the care of people with dementia have the skills needed to provide the best quality care in the roles and settings where they work. This is welcome. However, we must have such training for all those who work with people with learning disabilities throughout the health and social care sectors in order to prevent further cases such as Sandra's or our hearing once again those dread words, "Lessons have been learnt".

The social care funding crisis, where resources have not kept pace with the increasing numbers of people with a learning disability requiring them, is also having a major impact on the lives of people with a learning disability who experience dementia. Many are being excluded from appropriate support or are reporting cuts in their services. Indeed, a report published last year by the Learning Disability Coalition found that 34 per cent of respondents had experienced cuts. These reductions in care mean that there is less chance that symptoms of dementia will be identified or recognised.

Next mouth sees the publication by the Royal College of Psychiatrists and the British Psychological Society of guidance for the assessment, diagnosis, treatment and support for people with learning disabilities who develop dementia. It highlights the specific issues that people with learning disabilities and dementia present and identifies the key elements of an excellent service that would lead to a high-quality, safe and person-centred lifestyle as the dementia progresses. I would be interested to hear what the Government plan to do to promote this guidance.

I am afraid that this inequality in care facing people with a learning disability echoes throughout the health service, as evidenced by Mencap's campaign for justice for the families of people with a learning disability who died unnecessarily in the care of the NHS after they were treated differently because of their learning disability. Indeed, one of the six cases highlighted by Death by Indifference was that of Ted, who did indeed suffer from dementia. An ombudsman's investigation published earlier this year found that the NHS trust in charge of Ted's care was guilty of service failure.

Too often medical professionals cannot see past someone's learning disability through to his physical health needs. With regard to dementia, that means that the condition is often misdiagnosed as being behavioural and those in need miss out on treatment and pain management. I certainly took forward to hearing the Minister's response to the points that I have raised today.