Development of Dementia Services in Southern Derbyshire Nin

Development of Dementia Services in Southern Derbyshire Nin Bajaj, Consultant Neurologist Jenny Hartman, Consultant Psychiatrist

Background • Dementia: range of progressive, terminal organic brain diseases • Symptoms include decline in memory, reasoning and communication skills, ADLs, and loss of control of basic bodily functions • caused by structural and chemical changes in the brain • Emotional impact on people with dementia and their families enormous: depression and high levels of stress common

Background • common misconception: dementia is caused simply by old age • can also affect younger people • 560, 000 people in England are estimated to have dementia, with a steeply rising trend over the coming years • Direct costs to the NHS and social care currently at least £ 3. 3 billion a year • Overall annual economic burden is estimated at £ 14. 3 billion

Background • Estimated to account for three per cent of all deaths but over four times as many people may die with dementia • People can live with dementia for many years –average time from diagnosis to death is 11 -12 years • diagnosis often made late so the course of the illness can be as long as 20 years

Background • Main risk factor is age • Prevalence rises to 12. 2 per cent of people at age 82 • Cardiovascular factors are also important • Dementia over 65: “late-onset” dementia • At least a further 12, 000 people in England under 65 have “young-onset” dementia • This is thought to be under-diagnosed

Young Onset Dementia • particular problems for younger people • some GPs simply did not believe they could have dementia because of their age • Diagnosis therefore often very delayed • “My wife is 56 and is now in a nursing home. By the time the doctors diagnosed and referred her [to hospital] a lot of the damage was already done. Within months of being diagnosed she had to be sectioned. ” (Focus group • “At one end you’ve got ‘You’re too young to have dementia’, and at the other you’ve got ‘you’re 75, what do you expect? ’” (Focus group)

Demographics • Ageing population, especially among the “oldest old” (over 80 s) means numbers set to rise more steeply in England than many developed and developing countries • rising to over 750, 000 by 2020 • And to over a million by 2050

Treatment • Currently no proven treatments that can prevent development of dementia and no cures • The future may hold innovative new treatments (e. g. amyloid vaccine) • Cholinesterase inhibitors can delay the progression of symptoms in some with AD, Vascular dementia and Lewy Body disease

Diagnosis • Do. H: early diagnosis and intervention in dementia is cost-effective • But only a third to a half of people ever receive a formal diagnosis • For patients on anti-dementia drugs, UK is in the bottom third in Europe, below almost all northern and western European nations • Average reported time to diagnose the disease in the UK is also up to twice as long as in some countries

Diagnosis • The 2004 Facing Dementia Survey showed the reported time taken to diagnose Alzheimer’s disease • longer in the UK (32 months) • than in France (24), Spain (18), Italy (14) or Germany (10) • “It took 3½ years to get my diagnosis. I was referred around in circles with a diagnosis of depression and eventually… through the Alzheimer’s Society, given an appointment with a psycho-geriatrician and, after tests, • diagnosed. ” (Focus group)

Dementia and the GP • GPs’ own attitudes could hamper early diagnosis • widely-held perception that little can be done • lack of urgency attached to diagnosing and management • < 2/3 of GPs felt it important to look actively for early symptoms • GP’s knowledge survey on dementia: average score 47 per cent • Only 31 per cent felt they had enough training to diagnose and manage the disease • seventy per cent felt they had too little time to spend on people with dementia.

Diagnosis • Brain scanning (MRI or CT) recommended to establish a clear diagnosis • Only used regularly by 66 per cent of CMHTs • significant gaps in CMHTs’ ability to access specialist skills and services • A quarter had no access to a social worker • 29 per cent no clinical psychologist.

Diagnosis • Often not diagnosed until a patient admitted to hospital for an acute physical illness • but may be missed here too • mental health screening of older patients who appear confused is not routine • although the Older People’s NSF requires protocols that include screening • Hospital old age psychiatric liaison teams trained to do the job are not always available • vary widely in their approach and resources

A Memory Team • Memory Services are recommended by the NICE/ SCIE guideline as the single point of referral for all cases of suspected dementia • Memory Services can provide a cost-effective way of significantly increasing the number of people seen for early diagnosis and intervention • break down the stigma associated with dementia by not being labelled “mental health” or “old age psychiatry” • The role of CMHTs in diagnosis and early intervention is inconsistent, with most focusing solely on people with severe mental illness • Overall, less than a third of GPs agreed that there were satisfactory specialist services locally to meet need

Benefits of early Diagnosis • • • Diagnosing more people and doing so earlier may be cost-effective enables more to be done to delay progression of the disease clear diagnosis, could also reduce the number/length of acute hospital episodes And delay the need for admission to more expensive long-term care using therapies that reduce behavioural problems is known to reduce carer stress Carer stress often the trigger for unplanned entry into care homes NICE estimates the costs of cognitive behaviour therapy for unpaid carers at £ 27 million Early dx allows families to plan their future medical care and finances, including putting in place Enduring Powers of Attorney where Many make a positive choice to move into a care home

Progress in Dementia Research in the last 25 years • Identification of cholinergic deficits (1977), leading • to the development of cholinesterase inhibitors (licensed in 1997 for Alzheimer’s disease and 2006 for Parkinson’s disease dementia) • Amyloid cascade hypothesis and subsequent identification of autosomal dominant genes for familial Alzheimer’s disease • Identification of a-synuclein as the major protein in dementia with Lewy bodies

Progress in Dementia Research in the last 25 years • Identification of APO E 4 – a genetic risk factor for late onset Alzheimer’s disease; • Recognition of the importance of vascular risk factors and lifestyle in Alzheimer’s disease; • Description of Fronto-temporal dementias and identification of major genetic causes;

Treatment • currently no proven measures or treatments that can prevent dementia

Treatment • cholinesterase inhibitors help some people with dementia become less forgetful and confused • they cannot stop the disease eventually worsening • Since the licensing of these drugs between • 1997 and 2000, and approval by NICE in 2001, rates of • prescription have risen dramatically • suggesting that many more people are being helped by these medicines • During 2005 in England, the NHS spent some £ 60. 9 million on dementia drugs, around 60 per cent in primary care, and nearly 40 per cent in secondary care

Treatment • 2006 NICE issued an update of its original 2001 advice • Concluding that the cholinesterase inhibitors are cost-effective in moderate Alzheimer’s disease, but not in early or late stages • This decision is currently the subject of a judicial review

New Treatments • currently a range of trials including antiinflammatory drugs, such as aspirin, to help prevent or reduce progression of the disease • antioxidants such as Vitamin E, aimed at inhibiting free radicals • vaccine to treat or even prevent early stages of dementia • development of gene therapy and stem cell research

Investment in Research • • two large publicly funded clinical trials DOMINO Study, an MRC multi-centre £ 2. 6 million study looking at the use of cholinesterase inhibitors and memantine in severe dementia • The SAD study, an HTA £ 1. 5 million randomised study looking at depression in dementia.

De. NDRON • 2006 Do. H announced launch of seven new Local Research Networks in England (Dementias and Neurodegenerative Diseases Research Network – De. NDRo. N) • £ 3 million per annum to coordinate and deliver research studies which focus on the prevention, diagnosis and treatment of Alzheimer’s Disease, Huntingdon’s disease, Parkinson’s disease and motor neurone disease • The New Local Research Networks, part of the UK Clinical Research Network, are made up of regionally based, collaborative groups in NHS Trusts, Primary Care Trusts, Hospital and Universities and managed within each host organisation

NAO Recommendations • PCTs should benchmark their performance in diagnosing dementia against expected prevalence • set local targets for improvement • encourage more GPs to adopt dementia as a special interest

NAO recommendations • use the GP registers of dementia patients to feed into their local strategic needs assessments, in planning and commissioning their diagnostic, intervention and support services for people with dementia and carers

NAO Recommendations • Royal Colleges should the lead on developing a multi -professional protocol for diagnosis and early intervention in suspected dementia • should include: guidance on the skills needed to make formal diagnosis • a template on the type of information to give to people with dementia and their unpaid carers • details of the standards to apply in correspondence on referral, diagnosis and treatment, including guidance on copying this correspondence to family members/carers

NAO Recommendations • Where local areas do not have a Memory Service • they should commission one • This may be done as part of a CMHT, GP with special interest, or separately, for example by geriatricians or neurologists • The Memory Service should also be explicitly responsible for raising awareness among referring clinicians of young-onset (under 65 years) dementia to improve detection in this group

Dementia Steering Group • Clinicians- Neurology, Psychiatry, Psychology, Care of the Elderly, Neurorehabilitation • Therapists- Psychology, Occupational therapy, Speech Therapy, Psychiatry Specialist Nursing, ? Dementia Specialist Nurses • Others- Palliative care, Pharmacy Rep, lay representation (Alzheimer Disease Soc), PCT representative

Diagnostics • Led by Neurology and Psychiatry Services • Protocolled bundle of diagnostic tests

Suspected Dementia Neurology Other HCE Older Adult Psychiatry Basic screening- e. g. clinical history, MMSE Neurology Led Service- younger, complex, familial, neurological signs Psychiatry Ledolder, less clinical doubt over diagnosis Aftercare- Psychiatry Led with CMHT

Diagnostic Testing • Majority of older patients will have a typical hx for Alzheimer’s • A good hx and MMSE may be sufficient for many at the moment • In the future, a more definitive dx will be required e. g. before exposure to amyloid vaccines

Diagnostic Testing • For many younger patients, non-AD older patients, genetic dementia’s, further tests are required • No one test is sensitive and specific enough to give an answer on its own • Need combination of clinical opinion, neuropsychology and imaging

Diagnostic Testing • Neuropsychology: particularly useful for differentiating dementia from worried well, focal deficits, non-AD dementia, depression. BUT requires serial evaluation over 6 -9 months

Diagnostic Testing • EEG- slow wave changes would help differentiate a dementia from worried well, depression etc. BUT poor specificity and sensitivity is not as good as some imaging techniques

Diagnostic Testing • 99 m. Tc-HMPAO SPECT estimates cerebral blood flow • High sensitivity for differentiating dementia from non-dementia • Specificity for AD versus others not so good

Diagnostic Testing • High field MRI • In our hands (Nu. H) the most specific technique • Good concordance with clinical opinion • 3 T with specific dementia protocol • Needs expert interpretation • Currently only available through Prof Auer