Source
This report is largely based on the content of a chapter from the 2013/14 Report of the Director of Public Health, London Borough of Richmond upon Thames published in January 2014.
However, based on an update of content and review of conclusions, this report was published in February 2015.
1 Introduction
1.1. Aim
This needs assessment report sets out the current and future challenges that dementia presents to people with dementia, their carers, friends and families, the NHS and social care in Richmond. It also highlights key messages to guide the development and commissioning of services for people with dementia, their families and carers.
1.2. Who is this for?
This needs assessment report is intended to inform the policies, strategies, development and commissioning plans, and practice in local organisations including Council teams, NHS organisations such as the Clinical Commissioning Group (CCG) and Trusts, and other organisations, such as the voluntary sector and representatives of the public and patients.
2 Background
2.1. Dementia
2.1.1. Types & causes [1]
Dementia is caused by neurodegenerative or vascular disease, and its occurrence increases substantially in older age.
The neurodegenerative forms of dementia include Alzheimer’s disease, dementia with Lewy bodies (DLB), frontotemporal dementia; and are the result of accelerated degeneration of brain tissue.
Alzheimer’s disease and vascular dementia are the most common of dementia.
2.1.2. Prevention [2]
Vascular dementia occurs as a result of circulatory disease reducing the blood supply to areas of brain tissue.
Given the emerging evidence that there may be a vascular component to many dementias, interventions to address vascular risk factors (such as tobacco, poor diet, physical inactivity and alcohol; and intermediate disease precursors such as raised blood pressure, raised blood cholesterol, obesity and diabetes which arise from behavioural and other factors) should also help reduce the risk, progression, and severity of dementia. Protective factors also play a part and these include education and intellectual and social engagement.
2.1.3. Characteristics [3]
Dementia is a progressive and largely irreversible clinical syndrome that is characterised by a widespread impairment of mental function. Although many people with dementia retain positive personality traits and personal attributes, as their condition progresses they can experience some or all of the following: memory loss, language impairment, disorientation, changes in personality, difficulties with activities of daily living, self-neglect, psychiatric symptoms (for example, apathy, depression or psychosis) and out-of-character behaviour (for example, aggression, sleep disturbance or disinhibited sexual behaviour, although the latter is not typically the presenting feature of dementia).
2.1.4. Needs [3]
Dementia is associated with complex needs and, especially in the later stages, high levels of dependency and morbidity. These care needs often challenge the skills and capacity of carers and services. As the condition progresses, people with dementia can present carers and social care staff with complex problems including aggressive behaviour, restlessness and wandering, eating problems, incontinence, delusions and hallucinations, and mobility difficulties that can lead to falls and fractures. The impact of dementia on an individual may be compounded by personal circumstances such as changes in financial status and accommodation, or bereavement.
2.1.5. Diagnosis [1],[3]
No single routine test is available to provide definitive diagnosis of dementia, and diagnosis can be more difficult in the earlier stages. However, assessment of basic mental functions, including memory, attention span, concentration, communication, and planning, often using a questionnaire called the Mini Mental State Examination (MMSE) may be used as part of the diagnostic process.
Diagnosis may be undertaken by a GP, or can involve referral to specialists in neurology, elderly care, or old age psychiatry, possibly via a Memory Clinic service. In some cases brain scans may also help the diagnostic process.
2.1.6. Treatment [1],[3]
Most forms of dementia are progressive and cannot be cured. However, progression of vascular dementia can be managed by addressing general cardiovascular risk factors, including high blood pressure, diet, smoking, and diabetes. Also, in some patients, symptoms of Alzheimer’s disease and some other forms of dementia can be improved with medication, and potentially psychological therapies.
2.1.7. Care
Given the progression of dementia and the characteristic needs in many patients, home or residential-based packages of health and social care are often the most important element of a treatment package.
2.2. Cost of dementia in the UK
Nationally dementia care in the UK costs the NHS, Local Authorities and families around £23 billion a year.[4] This is projected to grow to £27 billion by 2018 driven by the ageing profile of the UK population.
Table 4 shows the distribution of costs of care for people with different stages of dementia according to the provider of care.
Table 4. Distribution of the percentage of annual costs of dementia care by provider.
| Provider | Percentage of annual costs of care, per person, in the community. | Percentage of annual costs, per person, in residential care | ||
|---|---|---|---|---|
| Mild | Moderate | Severe | ||
| NHS | 15 | 9.4 | 7 | 4.3 |
| Social services | 29.6 | 24.1 | 20.6 | 1.2 |
| Informal care | 55.4 | 66.6 | 72.3 | 3 |
| Accommodation | 0 | 0 | 0 | 91.5 |
| Total | 100 | 100 | 100 | 100 |
Source: Alzheimer’s Society, 2013
Carers clearly bear the majority of the costs of caring. Furthermore informal carers rather than health and social care, bear the greater cost as patients move from relatively mild to more severe dementia.
However the level and distribution of cost increases substantially when people move from the community into a care home setting. It is estimated that 80% of people with dementia living in care homes have severe levels of the illness.
3 Local Picture
3.1. Prevalence of dementia in Richmond
In Richmond Borough around 1860 people – which includes those not presenting to services or formally diagnosed – are estimated to be living with dementia. This estimate is based on use of a dementia calculator.[5] This tool estimates the prevalence of dementia – the number of cases – by applying national dementia prevalence rates to the local population. It takes into account the number of elderly people living in residential homes and care homes.
Table 2 shows the estimated number of people with dementia living in Richmond borough according to age and illness severity. A third of this group (around 600 people) are estimated to have a moderate level of dementia and 13% (around 230 people) have severe dementia. The table demonstrates the pattern of increasing severity of dementia among people 80 years and over.
Table 2. Estimated number of people with dementia in Richmond Borough according to age and severity (2012).
| Age | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| < 65 | 65-69 | 70-74 | 75-79 | 80-84 | 85-89 | 90-95 | 95+ | Total | % | |
| Mild | 25 | 59 | 93 | 148 | 247 | 259 | 145 | 40 | 1016 | 55% |
| Moderate | 25 | 31 | 45 | 82 | 139 | 155 | 98 | 33 | 607 | 33% |
| Severe | – | 6 | 11 | 30 | 49 | 62 | 54 | 22 | 234 | 13% |
| Total | 50 | 96 | 149 | 259 | 435 | 477 | 297 | 95 | 1858 | 100% |
Source: NHS England and NHS South of England, 2012
Around one third of people with dementia are estimated to live in residential care settings and almost two thirds in private households in the community. Of those living in private households, one third are living alone.[6] Consequently in Richmond around 1430 people with dementia live in the community (including around 480 living alone), and 430 people in care homes.
3.2. General health of people with dementia
People with dementia often have other health issues, for example, depression, diabetes, heart disease, and respiratory conditions that impact on their quality of life, complexity of needs and service requirements.[3]
It is important that people with dementia have routine check-ups of their physical and mental health, and that they have good access to general health services.
Local analysis[i] shows around 50% of Richmond patients with dementia have three or more other chronic conditions, including depression, diabetes, heart disease and respiratory conditions, see Table 3.
Table 3. Distribution of co-morbid dementia and other conditions among Richmond residents (GP population April 2013).
| Number of conditions* | Aged 65+ | All ages | ||
|---|---|---|---|---|
| Number | % | Number | % | |
| Dementia only | 130 | 11 | 156 | 13 |
| Dementia +1 | 188 | 16 | 214 | 18 |
| Dementia +2 | 191 | 16 | 202 | 17 |
| Dementia +3 | 156 | 50 | 170 | 52 |
| Total | 1105 | 100 | 1191 | 100 |
*Including: congestive heart failure, hypertension, ischaemic heart disease, disorders of lipid metabolism, diabetes, hypothyroidism, asthma, COPD, chronic renal failure, bipolar disorder, schizophrenia, depression, Parkinson’s disease, seizure, age-related macular degeneration, osteoporosis, rheumatoid arthritis, low back pain, immune-suppression transplant, glaucoma
Also, evidence from a national survey highlighted the impact of loneliness and social isolation on people living with dementia, particularly for those living alone.[4] Nearly two-thirds of people with dementia surveyed said they felt anxious or depressed. Of those living alone, nearly two-thirds reported feeling lonely. Difficulties in maintaining social relationships and other features of dementia contributed to this sense of isolation.
Also, research shows that people with dementia are frequent users of hospital services. In Richmond, hospital admissions rates for people with dementia are higher than seen in England as a whole (91 per 100,000 population aged 65 years vs 80 per 100,000 population 65 years, 2009/10 to 2011/12).[7]
Reports nationally have repeatedly shown marked variation in quality and effectiveness of hospital provision for people with dementia.[8], [9]
- The main reasons for admission to hospital for people with dementia are falls or fracture, urinary infection, chest infection and transient ischaemic attacks.
- People with dementia stay far longer in hospital than other people who are admitted for the same procedure.
- The longer people stay in hospital, the worse the effect on the symptoms of dementia and the individual’s physical health, discharge to a care home becomes more likely and antipsychotic drugs are more likely to be used.
Most recently the Care Quality Commission reported that in more than half of Primary Care Trust areas in the country, people with dementia living in a care home are more likely to go into hospital with avoidable conditions, such as urinary infections, dehydration and pressure sores, than similar people without dementia.[10] This national picture is reflected locally. Investigation of the Richmond care home population showed that hospital admissions were related to the same set of conditions.
3.3. Cost
Locally, the costs relating to different social care services are not recorded by diagnosis. Consequently limited information on local spending on dementia care by health services is available. National analysis suggests that investment on dementia is often not focussed in the most cost effective way, with an imbalance toward the later stages of the disease.[11]
In Richmond, analysis of annual data (2012/13) on unplanned admissions to acute hospital of people with dementia, found that the top reasons for unplanned admission were urinary tract infection, pneumonia, and hip fracture. The total cost of these unplanned admissions of people with dementia was over £2.2 million. A proportion of these admissions is likely to be avoidable and could result in substantial cost savings.
[i] The analysis is based on revised coding criteria for dementia, and use of hospital data in addition to GP practice data. Therefore the figure of 1190 total patients with dementia is higher than the number on GP dementia Quality and Outcomes Framework (QOF) registers
4 Local Services
4.1. Richmond strategy
The National Dementia Strategy[12] and Prime Minister’s challenge[13], in conjunction with the local context, are key drivers for action in Richmond. Richmond’s Health and Wellbeing Strategy[14] and Out of Hospital Strategy[15] provide the local framework for moving forward.
Our strategy commitments recognise that there is considerable scope to improve the quality of services for people with dementia and their carers. Delivery is dependent on an integrated approach to commissioning to health and social care and across the care pathway.
The implementation of the strategy offers a package of investment which is designed to release some resources, particularly from the acute sector, to fund services in other health and social care settings. The analysis reported in earlier chapters indicates that there is potential for achieving cost savings from reducing unplanned hospital admissions and length of stay in hospital.
4.2. Quality standards
NICE quality standards describe high-priority areas for quality improvement in supporting and caring for people with dementia, and along with guidance guide a pattern of investment in dementia care that is cost effective and affordable.[16], [17] Use of these quality standards by commissioners, providers and patients will be important in assessing whether high quality services for people with dementia are being delivered in Richmond.
Table 6: NICE Quality Standards for people with dementia
| · People with suspected dementia are referred to a memory assessment service specialising in the diagnosis and initial management of dementia.
· People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs. · People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice. · People with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing. · Carers of people with dementia are offered an assessment of emotional, psychological and social needs and, if accepted, receive tailored interventions identified by a care plan to address those needs. · People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan. · People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people’s mental health. · Carers of people with dementia have access to a comprehensive range of respite/short-break services that meet the needs of both the carer and the person with dementia. |
Richmond’s joint commissioning plans include important developments in services for people with dementia and their carers that will help achieve the NICE dementia quality standards and outcomes.
4.3. Diagnosis
4.3.1. Early & timely diagnosis
Diagnosis of dementia, particularly in the early stage of the illness, enables individuals and their carers to benefit from early treatment and support services.
However there is considerable debate (among clinicians and academics) about what the focus on early dementia actually means, particularly given that GPs are being encouraged to undertake ‘active case finding’ among patients over 75 years (and high risk groups). It is important that policy and practice is evidence based.
In order to ensure that benefits of dementia diagnosis for individuals and their families are realised it is worth making a distinction between ‘early’ diagnosis and ‘timely’ diagnosis. It is argued that ‘timely’ diagnosis is a better way of describing current policy and practice intention. [18]
‘a person centred approach, does not tie the diagnosis to any particular disease stage and encompasses the fact that the person (and/or their families and carers) will gain benefit from the process.’
The term ‘timely’ diagnosis also recognises that there may be adverse consequences of a premature diagnostic process, for example anxiety experienced among individuals with mild memory problems.
Support to carers is critical to enabling the individual to live well with dementia and is cost effective. Carer support and counselling at diagnosis can reduce subsequent care home placement by 28%.[19] Access to anti-dementia medications can improve cognitive functioning and help reduce behaviours that carers can find challenging.
Such early interventions can improve independent living and avoid crisis and unnecessary admissions to hospital as well as delay entry to long term nursing home care.[20], [21]
It is important to be clear that early diagnosis is not about implementation of population ‘screening’ for dementia. The introduction of screening programmes in the UK has always required an evaluative framework showing that benefits outweigh costs including the potential harm relating to over-diagnosis and over-treatment. As yet such evidence for dementia screening is lacking.
Table 5 shows the actual numbers of people who have been formally diagnosed with dementia in Richmond and are on GP dementia registers compared with the estimated prevalence. Currently 870 people with dementia are on GP Quality & Outcome Framework dementia registers compared to the estimate of 1,858 people. Consequently, approximately 46% of those estimated to have dementia have received a formal diagnosis in Richmond.
Table 5. Calculating the dementia diagnosis rate in Richmond
| Estimated prevalence of dementia | Number (all ages) |
|---|---|
| Living in the community | 1433 |
| Living in Residential Care | 425 |
| Total | 1858 |
| Practice dementia register (QOF data) | 870 |
| Diagnosis rate | 46% |
| Diagnosis gap | 988 |
| Proportion undiagnosed | 54% |
Source: Dementia calculator NHS Commissioning Board/ NHS South of England, 2012
This Richmond dementia diagnosis rate is similar to England. There is significant variation in dementia diagnosis rates across the London Boroughs, the highest being Islington with a diagnosis rate of 69%. Such variation shows that there is considerable potential for improving the rate of dementia diagnosis.
There is significant variation in diagnosis rate across general practices in Richmond. This variation may in part be due to some differences in actual numbers of people with dementia and influenced by the presence of nursing homes. The variation may also be due to coding of dementia and recording processes. This disparity in coding and recording processes is evident nationally. A recent analysis based on revised coding – undertaken by Richmond Risk Stratification Project – identified additional numbers of patients with dementia, see Table 5. This work will provide more accurate and improved dementia diagnosis rates.
General practice also has an important role in identifying and assessing the needs of carers of people with dementia. Carers of people who have dementia are particularly vulnerable to experiencing psychological distress and depression as well as having chronic physical illness.
Locally the Richmond Wellbeing Service – a primary mental health service – is now promoting their services to carers through GPs and carers support organisations. Carers who are experiencing depression and anxiety are able to refer themselves directly to this service.
In response to the Prime Minister’s challenge on dementia [13], Richmond has set a target dementia diagnosis rate target of 65% for 2015, see Table 7.
Table 7. Planned increase in dementia diagnosis rate in Richmond
| Year | |||||
|---|---|---|---|---|---|
| 2011/12 | 2012/13 | 2013/14 | 2014/15 | 2015/16 | |
| Diagnosis rates | 46.8% | 51.4% | 55.9% | 60.5% | 65.0% |
| Number of patients diagnosed with dementia | 870 | 977 | 1087 | 1200 | 1316 |
Source: NHS England and NHS South of England, 2012
4.4. Dementia friendly communities
Health and social care are essential in enabling people to live well with dementia. However, the need for wider support is increasingly recognised.
The national programme ‘Dementia friendly communities’ is designed to help communities meet the needs of people with dementia. Richmond Council has recently provided pilot funding to the Alzheimer’s Society to establish a programme of dementia friendly activities that help people to live well with dementia and improve their quality of life. An initial pilot phase will inform the setting up of four community hubs that will develop dementia friendly activities throughout the Borough, working in conjunction with a variety of services such as leisure centres and libraries.
5 Conclusion
Dementia is an important current and future challenge for health and social care in Richmond. The key conclusions from this needs assessment report are summarised below.
- The ageing profile of the Richmond population, and in particular the increasing proportion that are over 80 years of age, means that the numbers of people with dementia living in the Borough will increase.
- People with dementia often have other health issues such as depression, diabetes and heart disease. Maintaining both the physical and mental health of people with dementia is vital to their quality of life and wellbeing.
- In Richmond, as nationally, only about 50% of people with dementia currently receive a formal diagnosis. Early diagnosis of dementia adds value to people’s lives when it allows them to plan and receive treatment and care earlier, and can prevent future crises. However, the pursuit of strategies that result in premature diagnosis of individuals with mild memory loss risks potential harm through overtreatment and diversion of resources. To minimise the harm and maximise the benefits the focus needs to be on a ‘timely’ diagnosis of dementia.
- Families and friends rather than health and social care, bear the greater burden of caring for people with dementia. Support for carers is crucial to maintaining the quality of life of the person with dementia as well as the carer, and is a cost effective investment.
- The overall financial costs of dementia care are significant and are projected to increase. Current investment on dementia is often not deployed to best effect – being concentrated at the later stages of the disease. Local analysis suggests that further investment in preventative and community-based options that reduce unnecessary hospital admissions, and periods in hospital, could potentially achieve significant savings.
- Health and social care are essential but clearly not sufficient in ensuring people are able to live well with dementia. The creation of ‘dementia friendly communities’, a nationally-led initiative can be an important local focus for engaging all sectors of the community including businesses, public services and community groups to better understand dementia and support people in the early stages of the disease maintain their independence. This initiative challenges attitudes and can help overcome the stigma and isolation associated with dementia.
- It is important that the emerging evidence on prevention, particularly in relation to vascular dementia is recognised and reflected in local strategies and clinical practice.
Equalities Impact Needs Assessment (EINA) Preparatory Information.
This report was completed before the addition of preparatory Equalities Impact Needs Assessment (EINA) information to all needs assessments, considering the potential impact on groups, such as those of different age, sex, gender, sexuality, and ethnicity.
However, equalities issues were considered as part of the development of the report.
References
[1] NHS Choices http://www.nhs.uk/conditions/dementia-guide/pages/causes-of-dementia.aspx
[2] Public Health England/UK Health Forum (2014). Blackfriars consensus on promoting brain health: Reducing risks for dementia in the population. http://nhfshare.heartforum.org.uk/RMAssets/Reports/Blackfriars%20consensus%20%20_V18.pdf
[3] NICE. Dementia: Supporting people with dementia and their carers in health and social care. CG42. Nov 2006.
[4] Alzheimer’s Society (2013). Dementia: The hidden voice of loneliness. Alzheimer’s Society. www.alzheimers.org.uk/dementia2013
[5] NHS England and NHS South of England (2012). Dementia Prevalence Calculator. http://dementiapartnerships.com/diagnosis/dementia-prevalence-calculator/
[6] Knapp et al (2007). Dementia UK: Report to the Alzheimer’s Society Kings College London and London School of Economics and Political Science. www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2
[7] Public Health England (2013). Community mental health profiles 2013. Public Health England. www.nepho.org.uk/cmhp/
[8] Alzheimer’s Society (2009). Counting the cost: Caring for people with dementia on hospital wards. Alzheimer’s Society. www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1199
[9] Healthcare for London (2011). Dementia services guide. NHS London. www.londonhp.nhs.uk/wp-content/uploads/2011/03/Dementia-Services-Guide.pdf
[10] Care Quality Commission (2013). Second Annual Report 2013. www.cqc.org.uk/our-annual-report-2012/13
[11] National Audit Office (2007). Improving services and support for people with dementia. National Audit Office. London. www.nao.org.uk/report/improving-services-and-support-for-people-with-dementia/
[12] Department of Health (2009). Living well with dementia: A national dementia strategy. www.gov.uk/government/publications/living-well-with-dementia-a-national-dementia-strategy
[13] Department of Health (2012). Prime Minister’s Dementia Challenge. http://dementiachallenge.dh.gov.uk/about-the-challenge/
[14] Health and Wellbeing Strategy (May 2014) http://www.richmond.gov.uk/health_and_wellbeing_strategy_april_13.pdf
[15] Better Care Closer to Home Richmond Out of Hospital Care Strategy 2014 – 2017 (January 2014) http://www.richmondccg.nhs.uk/strategies%20policies%20and%20registers/Better_Care_Closer_to_Home_strategy.pdf
[16] National Institute for Health and Clinical Excellence (2010). Dementia Quality Standards NICE London. www.nice.org.uk/nicemedia/live/13802/60020/60020.pdf.
[17] National Institute for Health and Clinical Excellence (2013). Quality standard for supporting people with dementia. http://publications.nice.org.uk/quality-standard-for-supporting-people-to-live-well-with-dementia-qs30/list-of-quality-statements
[18] Burns A, Buckman L (2013). Timely diagnosis of dementia: Integrating perspectives, achieving consensus. British Medical Association/NHS England. http://www.dementiaaction.org.uk/assets/0000/3808/NHS_England_BMA_Diagnosis_Consensus.pdf
[19] Mittelman MS et al (2006). Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry 15:9,782-88
[20] Joint Commissioning Panel for Mental Health (2012). Guidance for commissioners of dementia services. Royal College of Psychiatry. www.rcpsych.ac.uk/pdf/JCP-MH%20dementia%20(March%202012).pdf
[21] National Institute for Health and Clinical Excellence (2013). Commissioning care for people with dementia. NICE. London. www.nice.org.uk/usingguidance/commissioningguides/dementia/home.jsp
Document information
Published: February 2015
Published: February 2018
Topic Lead: Amanda Killoran