Dementia and severe sight loss - understanding people’s experiences, needs and aspirations: the case for quality care Sube Banerjee Professor of Mental Health and Ageing, Institute of Psychiatry, King’s College London

Dementia – the case for action

Growth of numbers of people with dementia The World Alzheimer Report (2009) estimated that there are: 35.6 million people living with dementia worldwide in 2010 Increasing to 65.7 million by million by 2050

Worldwide cost of dementia The societal cost of dementia is already enormous. Dementia is already significantly affecting every health and social care system in the world. The economic impact on families is insufficiently appreciated. The total estimated worldwide costs of dementia are US$604 billion in These costs are around 1% of the world’s GDP 0.24% in low income 1.24% in high income

Worldwide costs of dementia The World Alzheimer Report (2010) estimated that: If dementia care were a country, it would be the world’s 18th largest economy

Bringing in back home, the local case - Dementia UK Report simple messages – common and costly Numbers with dementia 700,000 In 30 years – doubling to 1.4 m UK dementia cost - £17billion pa In 30 years – tripling £51billion pa Population prevalence (%) of dementia by age Knapp et al (2007)

Dementia UK Report simple messages – under-recognised, under- treated Variation in treatment and diagnosis of dementia in the UK Variation in treatment and diagnosis of dementia across Europe 24x variation

National Dementia Strategy - England Published 2 Feb 2009 Five year plan 17 interlinked objectives £150 million extra funding Four key themes Improving awareness Early and better diagnosis Improved quality of care Delivering the Strategy

Objectives of the National Dementia Strategy – substantial progress in all

Severe sight loss in dementia, the case for action

Background 12% of over 75s are visually impaired 6% of over 65s have dementia Higher prevalence of visual impairment in dementia Co-existence of cognitive and visual impairments: Complicate detection Compound the impact of the respective conditions Complicate coping and management Lack of formal research in this population

Aims & Objectives  Investigate the perceived impact of serious visual impairment and dementia on daily living and quality of life  Explore needs for support, coping strategies and pathways to care  Formulate strategies to address the needs of older adults with both conditions

Qualitative research design  In-depth individual interviews  Purposive sampling for diversity  Participants recruited from services for people with visual impairment and dementia  52 interviews conducted: 17 older adults with both conditions, 17 family carers, 18 care professionals  Thematic analysis by two researchers

Five core themes Help to explain the complexity of the needs of older people with joint visual impairment and dementia: safety ‘v’ independence heightened disorientation and distress visual hallucinations vulnerability to isolation difficulty in accepting multiple losses

Safety ‘v’ independence Inability to manage and impaired judgement The neighbours were worried about her because she was really an accident waiting to happen because she couldn’t see properly, but was still insisting on going out, getting on the bus, doing all sorts of things. (Teresa’s daughter) Limits on activities and conflict in the caregiver relationship I do get a lot of enjoyment from my workshop, no, it’s more than enjoyment, I would be thoroughly miserable if I was kept out of it. Well it would bust our marriage up I think if that happened. (Robert) Excessive risk minimisation You see them [in care homes] being herded about, put in wheelchairs even though they can walk but it’s safer for the nursing home to put them in a wheelchair and push them from a to b. (Senior Occupational Therapist)

Heightened disorientation and distress  The experience of visual impairment and dementia together created a profound sense of disorientation  Unable to orientate self using memory or visual cues Because of his memory he forgets where he is quite often, he forgets he’s in his chair or his bed. He doesn’t visually recognise the house when he gets up in the morning after he’s been to sleep, and he may not recognise where he is because of the memory problems. (Clarence’s wife)  Anxiety manifested in restless and disruptive behaviour  High demands on family carers

Visual hallucinations  1/3 sample suffered from hallucinations  Increased disorientation and distress Well it is disorientating. I mean now you’ve hit on the key word I think that I’m suffering from. Because life can be very unsure, put it that way…See when you have lived all your life with your sight you know that what you see is something definite or whatever the term is. But when it’s an hallucination it’s awfully difficult for you to say well that’s silly, no it can’t be.” (Donald)  Carers learned to adopt a non-confrontational approach

Vulnerability to isolation  Unable to pursue hobbies / interests  Carers responsible for providing stimulation But you see if he’s left alone he has no way of entertaining himself because you know, unless he’s listening to radio like he is now there is nothing that he can do because he can’t see to read and he forgets anyway where he is so I think they need a lot of one on one care. (Michael’s wife)  Day centres valued source of social interaction  Importance of one-to-one interaction

Difficulty in accepting multiple losses  Acceptance important coping strategy  Multiple losses substantial threat to self Every day really, there was another thing that he couldn’t do any more and in the end he just was feeling totally useless. I mean he used to do all the garden and then he would still want to do that even though he couldn’t see and he would like plant plants one day and the next day he thought they were weeds and was pulling them up and things like that you know, it’s really sad. He was just so desperate to still lead as normal a life as possible. (Donald’s daughter)  Denial common in this group

Family caregivers faced exceptional demands Many wholly dependent on their relative for orientation and stimulation, as well as their everyday care. Many caregivers were physically exhausted, but found it difficult to leave the older person for even brief periods of time. The problems of orientation and the constant calling out and the demands on the carers and I think that if that can be recognized by social services and perhaps in those circumstances these people need more support because it’s so constant, it’s all the time, it’s throughout the night, they are constantly, constantly called, they get tired. (Community Psychiatric Nurse)

Recommendations  High level of unmet need in a growing population.  Visual impairment exacerbates confusion in Alzheimer’s disease Optimise visual input - adequate eye care and lighting Clear verbal communication – enhance orientation and confidence in the environment One-to-one contact - raising awareness to time, place and person Sharing information/skills - for accurate assessment of risk to promote independence Management of hallucinations Carers respite services Explore role of counselling and support

Good-quality early diagnosis and intervention for all

Services for early diagnosis and intervention in dementia for all Working for the whole population of people with dementia ie has the capacity to see all new cases of dementia in their population Working in a way that is complementary to existing services About doing work that is not being done by anybody Service content Make diagnosis well Break diagnosis well Provide immediate support and care immediately from diagnosis Banerjee et al 2007, IJGP

Only a third at most of people with dementia receive any specialist health care assessment or diagnosis When they do, it is: Late in the illness Too late to enable choice At a time of crisis Too late to prevent harm and crises The fundamental problem - now

80% of people with dementia receive specialist health care assessment or diagnosis When they do, it is: Early in the illness Early enough to enable choice In time to prevent harm In time to prevent crises The solution

Living well with dementia in care homes Reduced use of antipsychotic medication

Ministerial review of use of antipsychotics in dementia Published November 2009 Comprehensive review Negative effects Positive effects Analysis of reasons for current clinical behaviour Formulate practical clinical plan to deal with problems found

New data and extrapolation NHS Information Centre for Health and Social Care completed analyses using the IMS Disease Analyzer Practices from England, Wales, Scotland and Northern Ireland a representative UK sample by age and sex. 1,098,627 patients 12-month period from 1 April 2007 to 31 March ,190 people (17.5%) over the age of 65 10,255 (5.3%) received a prescription for an antipsychotic. Estimates for the report 25% people with dementia receiving an antipsychotic 180,000 people with dementia receiving an antipsychotic Includes people with dementia at home as well as people in care homes

Summary of risks and benefits at a population level of the use of atypical antipsychotics for BPSD in people with dementia data suggest that treating 1,000 people with BPSD with an atypical antipsychotic drug for around 12 weeks would result in an additional 91–200 patients with behaviour disturbance showing clinically significant improvement an additional 10 deaths; an additional 18 CVAEs, around half of which may be severe; no additional falls or fractures; and an additional 58–94 patients with gait disturbance. For UK 1,800 deaths per year 1,620 severe CVAEs

Analysis of why Symptom of underlying system failure in health and social care for people with dementia 1960s response to a 21 st century challenge Why lack of response to clear warnings It is complicated System does not allow change Knowledge Attitudes Provision Need to treat the cause as well as the symptoms

Action Use quality improvement mechanisms Improve skills in primary and social care Provision of specialist input

What are the levers for change?

Operating Framework 2008/9 ‘dementia: providing people with dementia and their carers the best life possible is a growing challenge, and is one that is becoming increasingly costly for the NHS. Research shows that early intervention in cases of dementia is cost-effective and can improve quality of life for people with dementia and their families. The Department will shortly be publishing details of the clinical and economic case for investing in services for early identification and intervention in dementia, which PCTs will want to consider when developing local services ’

Operating Framework 2008/9 ‘dementia: providing people with dementia and their carers the best life possible is a growing challenge, and is one that is becoming increasingly costly for the NHS. Research shows that early intervention in cases of dementia is cost-effective and can improve quality of life for people with dementia and their families. The Department will shortly be publishing details of the clinical and economic case for investing in services for early identification and intervention in dementia, which PCTs will want to consider when developing local services ’

Operating Framework 2009/ There have been a number of important developments in the last year within the context of High Quality Care for All that will help PCTs determine how they develop and implement their local plans. These cover the following areas: alcohol;dementia; end of life care; mental health; military personnel, their dependants and veterans; mixed-sex accommodation; people living in vulnerable circumstances; and people with learning disabilities. National Dementia Strategy 62. The National Dementia Strategy will be a comprehensive framework aimed at driving up standards of health and social care services to improve the quality of life and quality of care for people with dementia and their carers. PCTs will want to work with local authorities to consider how they could improve dementia services Nationally, there is a range of tools to assist PCTs and specialised commissioning groups in delivering their priorities as world class commissioners. These include, but are not limited to: National Support teams dementia the developing National Support teams (NST) for health inequalities, tobacco, alcohol, infant mortality, teenage pregnancy, sexual health, vaccinations and dementia; and

Revision to the Operating Framework for the NHS in England 2010/11 One of only two new specific priorities 13. During the recent sign-off of SHAs plans, two areas stood out as not being given sufficient emphasis. The first is ensuring that military veterans receive appropriate treatment… The second area is dementia. NHS organisations should be working with partners on implementing the National Dementia Strategy. People with dementia and their families need information that helps them understand their local services, and the level of quality and outcomes that they can expect. PCTs and their partners should publish how they are implementing the National Dementia Strategy to increase local accountability for prioritisation.

Revision to the Operating Framework for the NHS in England 2010/11 One of only two new specific priorities 13. During the recent sign-off of SHAs plans, two areas stood out as not being given sufficient emphasis. The first is ensuring that military veterans receive appropriate treatment… The second area is dementia. NHS organisations should be working with partners on implementing the National Dementia Strategy. People with dementia and their families need information that helps them understand their local services, and the level of quality and outcomes that they can expect. PCTs and their partners should publish how they are implementing the National Dementia Strategy to increase local accountability for prioritisation.

Quality outcomes for people with dementia: building on the work of the National Dementia Strategy (DH, 2010) ‘There are four priority areas for the Department of Health’s policy development work during 2010/11 to support local delivery of the Strategy. These areas provide a real focus on activities that are likely to have the greatest impact on improving quality outcomes for people with dementia and their carers. It is important to emphasise however that the priorities are enablers for local delivery of the Strategy in full, across all 17 objectives, as well as the work to implement the recommendations of the report in to the over-prescribing of antipsychotic medicines to people with dementia. The four priority areas are: Good quality early diagnosis and intervention for all - Two thirds of people with dementia never receive a diagnosis; the UK is in the bottom third of countries in Europe for diagnosis and treatment of people with dementia; only a third of GPs feel they have adequate training in diagnosis of dementia. Improved quality of care in general hospitals - 40% of people in hospital have dementia; the excess cost is estimated to be £6m per annum in the average General Hospital; co-morbidity with general medical conditions is high, people with dementia stay longer in hospital. Living well with dementia in care homes - Two thirds of people in care homes have dementia; dependency is increasing; over half are poorly occupied; behavioural disturbances are highly prevalent and are often treated with antipsychotic drugs. Reduced use of antipsychotic medication - There are an estimated 180,000 people with dementia on antipsychotic drugs. In only about one third of these cases are the drugs having a beneficial effect and there are 1800 excess deaths per year as a result of their prescription.’

DH commissioning packs (Landsley 2010) Commissioning packs are tools to help commissioners improve the quality of services for patients, through clearly defined outcomes that help drive efficiency by reducing unwarranted variation in services. Each pack contains a set of tailored guidance, templates, tools and information to assist commissioners in commissioning healthcare services from existing providers, or for use in new procurements. Integral to each pack is an evidence-based service specification which ensures that patients are placed at the forefront of the service and are central to decisions about their care. The specification is non-mandatory and can be adapted to reflect local needs and once agreed with the provider should inform part of a renegotiated contract or form the relevant section of the NHS standard contract. By bringing together the clinical, financial and commercial aspects of commissioning in one place, the packs simplify processes and minimise bureaucracy. 1. Cardiac rehabilitation – Oct Dementia – March Chronic obstructive pulmonary disease

Money clinical/cost effectiveness

Early intervention for dementia is clinically and cost effective – “spend to save” 215,000 people with dementia in care homes -- £400 per week Spend on dementia in care homes pa £7 billion pa 22% decrease in care home use with early community based care 28% decrease in care home use with carer support (median 558 days less) Quality – older people want to stay at home, higher qol at home Take an additional 220 million pa Delayed benefit by 5-10 years Strategic head needed Model published by DH 20% releases £250 million pa y6

Cost effectiveness The Net Present Value would be positive if benefits (improved quality of life), rose linearly from nil in the first year to £250 million in the tenth year. This would be a gain of around 6,250 QALYs in the tenth year, where a QALY is valued at £40,000, or 12,500 QALYS if a QALY is valued at only £20,000. By the tenth year of the service all 600,000 people in England then alive with dementia will have had the chance to be seen by the new services A gain of 6,250 QALYS per year around 0.01 QALYs per person year. A gain of 12,500 QALYS around 0.02 QALYs per person year. Likely to be achievable in view of the rise of 4% reported from CMS. Needs only:- a modest increase in average quality of life of people with dementia, plus a 10% diversion of people with dementia from residential care, to be cost- effective. The net increase in public expenditure would then, be justified by the expected benefits. Please ignore – not English - economics Banerjee and Wittenberg (2009) IJGP

Dementia care pathway – simple, navigable and commissionable specialist older people’s mental health services primary care Peer & voluntary Sector support Acute trusts social care community & care homes Help seeking primary care DIAGNOSIS specialist care social care 1. Encourage help seeking and referral 2. Locate responsibility for early diagnosis and care 3. Enable good quality care tailored to dementia

Thank you!