From nuclear power to table tennis
dementia emerging from the parliamentary shadows

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In the last few months, the important issues of elderly mentally ill people and dementia have finally been the subject of significant and hopefully, ground-breaking debates in Westminster.

In a debate about dementia sufferers, Jeremy Wright MP (Con) put this in startling context when he noted in parliament there are “531 all-party groups, which range in significance, on subjects from nuclear power to table tennis but, as of June this year (2007), there was no all-party group on dementia”.

In October 2007 there was a debate on ‘Dementia Sufferers’ and more recently in January 2008, ‘Elderly Mentally Ill People’ was debated at length.

Dementia Sufferers – 24th October 2007
An erudite opening speech by chairman Jeremy Wright MP explored a variety of issues related to dementia sufferers. He noted that dementia affects 700,000 people, is contracted daily by approximately 500 new people and will grow in incidence by 40 per cent in the next 15 years (to more than 1 million sufferers by 2025 and to 1.7 million by 2051). He observed, as many clinicians already know, that despite these facts there has been no sustained pressure on the Government to take action on dementia in the way there is for other medical conditions. He ponders why this is the case, particularly in light of the Dementia UK report published in February 2007 (Alzheimer’s Society, 2007). This report, part-commissioned by the Alzheimer’s Society was intended to provide coherent evidence of the prevalence and economic cost of dementia in the UK, and in particular to combat the inadequate attention by policy makers. Another important report from the National Audit Office (NAO) entitled, “Improving services and support for people with dementia” was published in July 2007 (National Audit Office, 2007). He also noted the Government was due to pull all this together in completing a National Dementia Strategy due for release at the end of summer 2008.

Economic burden
The huge economic cost and burden was illustrated by these reports – the NAO estimated the annual economic burden of dementia to be a colossal £14.3 billion. The scale of this is again put into startling context as this is more than the costs incurred by strokes, heart disease and cancer combined.

Mr Wright considered the emotional aspects of the disease and suggested because of the current lack of effective treatments and cure, there is potentially a nihilistic view in the sense of ‘what’s the point?’ in referring for a disorder with no effective treatment. However, whilst acknowledging lack of resources in some areas, he pointed out the benefits of an early referral, not only for diagnosis but also for the sufferers and families to begin to make plans and cope better with what is going to happen, with appropriate advice, education and support.

The NAO report was discussed by officials from the Department of Health when they appeared before the Public Accounts Committee in October 2007. The officials reacted positively to the idea of providing a single point of contact to enable people to get the necessary information and advice on help and services. It was noted that “less encouragingly (the officials) spoke only of how such provisions might be made within the NHS”. Mr Wright hoped there could be more joint working with the voluntary sector as demonstrated by the Newbury Memory Clinic where everyone who attends is referred to an Alzheimer’s Society advisor. He envisaged this model of good practice to be rolled out nationally.

Royal College of Psychiatrists
Mr Wright further noted and quoted Dr David Anderson, the chair of the Royal College of Psychiatrists faculty of old age psychiatry, who levelled “fairly robust criticism” at the situation of mental health services for older adults. Dr Anderson opined that “some PCTs and Trusts are proposing the dissolution of specialist older people’s services with patients transferred to the care of general psychiatry services with no training in older people’s mental health…claiming this creates an ageless service. This is a dishonest way of cutting costs to the detriment of older people…and it will provide older people with an inferior, second-rate service…PCTs have no interest in anything other than target-driven working-age mental health services”.

Dementia research
There was an interesting passage in Mr Wright’s speech about the state of dementia research. He noted only 1.4% of research papers since 2002 have been on this subject and between 2000-01 and 2004-05, in respect of national research programmes, funding for research dropped in cash terms from £12.9 million to £6.8 million and, as a percentage of the health budget, from 0.03 to 0.01%. He further observed the UK spends 24p per citizen on dementia research compared with 66p per citizen spent in the USA. He summed up this odd state of affairs succinctly, “it is illogical that we should spend so much less on research into dementia than we do on research into other conditions that cost us, as a state, proportionately much less”. Graham Stuart MP (Con) noted that the “missing link” as Help The Aged called it, was the area of research.

Care homes
The NAO report noted one third of dementia sufferers live in residential care homes, and that half of people in residential care homes and two thirds of people in nursing homes have some form of dementia. Mr Wright felt that whilst staff training in care homes was essential – “there are no two ways about it: care home staff need to be properly equipped to deal with dementia” – the quality of such training was not widespread and he had concerns about the inappropriate administration of sedatives. Dr Pugh commented that 40% of dementia sufferers in care homes are treated with neuroleptic drugs, and that whilst in some cases this was wholly appropriate, some chemically managed situations could be treated in other ways. The NAO report also noted too few specialist places available, it estimated there are 124,000 registered places for 201,000 dementia sufferers.

Carers
The issue of dementia sufferers living in their own home was considered. This group is looked after in the main by the lifeline of 476,000 unpaid carers who stand between the dementia sufferer and much more expensive, and ultimately undesirable, admission into residential and nursing care. Mr Wright also drew attention to emerging technologies that may assist independent living such as telecare and extra care housing. Mr Stuart posed the question: “who will care for carers, if we do not?” He suggested there will be no one to save the Government £6 billion a year as those carers now do. He also noted that it has been estimated that £1 of Government money spent in the voluntary sector provides between £11 and £15 in services. The Parliamentary Under-Secretary of State for Health, Mr Ivan Lewis MP was present and outlined the development of an expert carers programme to be launched in the summer 2008. This national programme would involve local training courses for carers to help them with practical issues such as lifting and handling and with some emotional issues “so that they feel confident in taking on and working with the professionals and the public services, not confrontationally but to represent the best interests of the person whom they love”.

Mr Wright finally commented on the vital concerns about respite care; being essential that respite care is both readily available and that the quality of care should be extremely high. He was hopeful that all the issues he raised needed to feature in the Government’s National Dementia Strategy, but more importantly clearly outline how they will be delivered. Dr John Pugh MP (LibDem) whole-heartedly endorsed these highly specific requests by Mr Wright because “they are entirely deliverable”.

Single reference point
Dr Pugh strongly advocated there needed to be better community management of dementia and the need for a single reference point for carers. He suspected such a reference point would not be the GP, but a specialist attached to a practice who was trained in geriatric medicine. Towards the end of the debate Mr Lewis agreed this was a difficult point. He believed however that in every community there should be a single point of contact, “which I would describe not as a one-stop shop, because that is unrealistic, but as a first-stop shop”.

Mr Lewis suggested the national strategy would firstly raise awareness about dementia and secondly enhance early diagnosis and intervention (ensuring that primary care professionals have the maximum possible knowledge about dementia and a professional commitment to ensure referral to specialist secondary care services – such secondary services hopefully having resources suitably and proportionately bolstered and funded?). The third focus of the national strategy was on improving the quality of care, whether that be in people’s homes, hospitals or care homes. He suggested that we must continue to campaign to put dignity at the heart of all care services but that he did not accept the idea that we should always blame the lack of resources. He interestingly proposed that wards where more than 50% of the patients have dementia require different staffing arrangements from those where that is not the case and that “we pay NHS managers to make those decisions and to get that right”. He compared this to the well-established debate about pupil-teacher ratios in the education system and that there should be a debate “not about Ministers prescribing a certain number of nurses per patient on every ward in the country - that is not our job - but about managers, whose job it is to ensure appropriate staffing arrangements” on wards where dementia sufferers predominate to ensure “high quality, personalised care”.

The Minister, in announcing the transformation plan of the national dementia strategy, was determined “that this disease is brought out of the shadows…By concentrating on improving awareness, diagnosis and managing the disease, we will help transform the lives of those with dementia by improving their quality of life.”

Elderly Mentally Ill People – 15th January 2008
Dr Vincent Cable (LibDem) opened this Adjournment debate in Westminster Hall. In his initial statement he produced further statistics pertaining to the elderly. He noted that ‘crude’ figures suggest that about 3.5 million people are loosely defined under the general heading of having mental illness in old age; one in five people over 80 have senile dementia, and two in five have depressive illness – these numbers being ‘enormous’ and likely to reach ‘pandemic’ proportions. Depression amongst the elderly is expected to double by the middle of the century to approximately 5 million sufferers and the total mentally ill elderly population would be about 7 million. This debate sensibly expanded to also include anxiety, delirium and problems related to drugs and alcohol.

Mr David Taylor (Lab/Coop) felt the care of older mentally ill people must transfer to general hospitals in many circumstances “as they were often left to vegetate in entirely inappropriate circumstances” with unsatisfactory informal caring arrangements. In reply Dr Cable commented that it is often not general but specialist hospitals where the best treatment is found. He further expanded on the problem of under-diagnosis of mental disorders in the elderly (Age Concern, 2007), even though 40% of people who visit GPs are elderly people with some form of mental illness.

Old age services being dismantled
Dr Cable, in discussing the issue of mental health services for the elderly, quoted the Royal College of Psychiatrists who stated, “Older people’s mental health services, which have been among the most innovative, are being cynically dismantled” and “there is clear discrimination within Government health policy”. Mr Norman Lamb MP (LibDem) concurred and further noted the Royal College of Psychiatrists has observed that PCTs throughout the country seemed to be transferring the care of older people with mental health problems to general psychiatric services. He felt that part of the justification for transferring specialist services for the elderly mentally ill people to general psychiatric services is to end age discrimination by providing the same service for all ages, but he noted the obvious paradox in that dismantling specialist services for elderly people actually increases age discrimination, as the services provided would not be appropriate, suitable or suitably specialist for the particular needs of elderly people with mental health problems. The College feared the emergence of a second-rate inferior old age service that will lose specialisms, and drew attention to the fact that the NSF for mental health has introduced the targeted commission of new services e.g. early psychosis, assertive outreach and crisis resolution home treatment teams, and the £300 million investment in these new services broadly excludes older people and hence is again discriminatory (as is the £1.65 billion cash increase for adult mental health services over four years - yet again excluding older people!).

Payment by results
Mr Lamb also noted the potentially important issue of payment by results (PBR) where he surmised there may be a tendency to channel money dis-proportionately into acute treatment to meet stringent waiting-time targets. He pointed out the vital fact that currently, because PBR does not yet operate within mental health, there is less “money in the pot” for PCTs to enter contractual arrangements with mental health trusts for funding their services and hence they suffer.

He also noted the report ‘Improving Services and Support for older People with Mental Health Problems’ (Age Concern, 2007) which put into context the ridiculous paradox whereby the majority of patients in acute hospitals are over 65, of which a significant proportion have mental health issues, but there are poor old age liaison services (compared to ‘embedded’ psychiatric liaison services in acute hospitals for under 65s) in many hospitals and overall insufficient co-ordination between psychiatric services and acute hospitals. There are acute hospitals with a captive audience as it were, of elderly people with mental health problems not being accessed en masse in such a venue. Every acute hospital should have an embedded old age liaison service in it – this would lead to more patients being seen with a better response time and earlier interventions, better joint working between the geriatric and psychiatric services, and the potential to access other services such as OT, social services and physiotherapy in a seamless way, to promote the holistic and person-centred care that elderly people inevitably need. I wholeheartedly concur with Mr Lamb’s observation that there is “insufficient input” for older people with mental health problems in the acute hospital setting. The report very worryingly, given the huge numbers involved that will only increase further, came to the conclusion that nobody, including commissioners, had this matter on their agenda.

Depression
Mr Mike Penning (Cons) observed the “shocking” figures and statistics quoted in the debate. He added some more pertaining to elderly people with depression. He felt “passionately” that depression among older people is one of the “undiscussed, quiet areas that does not quite receive the publicity it deserves.it is a major problem”. He quoted Age Concern figures that one in four older people have symptoms of depression, but sadly, only one third of those with depression ever seek medical advice or ever discuss it with their GP. He noted witness statements from the Age Concern report implied a poor response from GPs even if older people do discuss these issues with their GP. Mr Penning felt this contributed to the disproportionately higher suicide rate for older people and went on to say “it cannot be right that the older generation, who have done so much for us, have a disproportionately higher suicide rate because they are not receiving the help that they often need”.

The Parliamentary Under-Secretary of State for Health, Mr Lewis concluded the debate. He made several salient and encouraging comments about future governmental initiatives in the area of older people’s mental health. He again reiterated that he intended “to bring dementia out of the shadows” and further admitted with regard to dementia that “public policy has almost been in denial about it”.

Mr Lewis also explained he was putting the dignity of older people at the heart of the care services at all times and promised personal leadership on this matter. This may loosely correspond to the human rights-based approach being strongly advocated nationally currently by various organisations (e.g. Mental Health Act Commission & Ministry of Justice) and in particular a response to that scathing report from the Joint Committee on Human Rights (House of Lords House of Commons, 2007) which strongly criticised the government for the overwhelming lack of leadership and promotion of the Human Rights Act 1998 (Mr Lewis also presented oral evidence to this committee on behalf of the Government).

He advocated a joined-up, integrated approach to health and well-being in every local community that shifts towards early intervention and prevention. He announced the government had signed the ‘Putting People First’ concordat (Department of Health, 2007) in December 2007 with local government and the NHS. He believed in the next three years (beginning from April 2008) this “radical transformation of the social care system in partnership with the NHS” would focus on early intervention and prevention, and empower people through personal budgets and access to more information and advice.

The future
Finally Parliament has acknowledged the vital, yet seemingly forgotten issues in the upper echelons of power, surrounding older people’s mental health. It does seem ludicrous that there have not already been such all-party debates but hopefully now it is receiving such airtime in parliament, this will act as a significant catalyst to future developments. Encouragingly the proposed National Dementia Strategy may be an important part of this new beginning and governmental strategy. As I write the All-Party Parliamentary Group on Dementia inquiry into antipsychotic drug use in care homes has recently happened and is due to report its findings in March 2008.

The time is certainly ripe for long-awaited and overdue investment at all levels for dementia and mental health elderly care. It will be interesting to see if the forthcoming National Dementia Strategy will seriously address these previously ignored and under-resourced areas and come with more than adequate (pump primed) funding unlike the relatively toothless NSFOP which had no additional funding. Hopefully it will herald a long overdue epoch for the care of the elderly with dementia or mental disorders.

Martin Curtice
Consultant Old Age Psychiatrist

BGS Newsletter, March 2008
Issue 15 ISSN 1748-6343 15