Improving healthcare for people with dementia in England: good progress but more to do

Introduction

The announcement in late 2014 of a £55 payment to general practitioners in England for each patient they diagnose as having dementia was further evidence of the emphasis the government has been putting on this previously neglected condition. Increasing the diagnosis rate was only one aspect of a wide range of initiatives that have been pursued since 2009 when the National Dementia Strategy ¹ was published and given even greater prominence under the Prime Minister's Challenge on Dementia inaugurated in 2012. ² In 2014, to inform the government’s work in drawing up its vision for further improvements from April 2015, a rapid review was conducted to consider what had been achieved and what future action should be considered. ³

While people with dementia and their relatives clearly require integrated and coordinated health and social care, here we consider only healthcare, focusing on four key aspects: diagnosis; post-diagnostic healthcare; hospital care; and training of healthcare staff.

Diagnosing dementia

There are several ways in which the health and quality of life of people with dementia and that of their unpaid carers can potentially benefit from a formal diagnosis of dementia (Box 1). ⁴ However, difficulty in measuring such impact means that it is impossible to determine the overall benefit to the population of an increase in the diagnosis rate. Assessment of benefit is limited to qualitative evidence. ⁵ This lack of quantifiable benefits, together with concerns about the availability of such support in practice, is partly responsible for the putative advantages of diagnosis being challenged.

Box 1.

Potential benefits of diagnosing dementia for people and their relatives.

Facilitates timely intervention and treatment resulting in better outcomes; Ensures co-morbid conditions are recognised and treated; Ensures people with dementia and relatives are aware of appropriate services and support which might extend independent living; Provides advice and support (including financial) to people with dementia and carers; Provides information on prognosis and expectations; Enables people with dementia to make long-term plans including advance care planning for end-of-life care; Increases awareness of dementia among clinicians and other professionals; Provides opportunity to participate in research studies; Can help to reduce stigma about dementia.

In 2009, an estimated 44% of people with dementia had been diagnosed. ¹ The government’s ambition has been to reach 67% by 2015. ² However, what appears to be a straightforward measure presents several methodological challenges. The number diagnosed, derived from the Quality and Outcomes Framework, ⁶ may be an underestimation as general practices may fail to include everyone with a diagnosis: one study found 8.8% were not recorded. ⁷ Despite that, the number of people with diagnosed dementia has risen rapidly by 10% a year in England, from 232,000 in 2008/2009 to 344,000 in 2013/2014. ⁶

Estimating the true prevalence presents a great challenge. Distinguishing dementia from mild cognitive impairment can be imprecise and changes in international definitions mean the boundary has altered. ⁸ While the availability of clinical criteria reduces the influence of professional judgement, it does not eliminate this source of variation. Second, prevalence has inevitably been based on the consensus view of experts reviewing the results of population surveys. Until recently this was restricted to six surveys conducted between 1989 and 1993, ⁹ dominated by the first cognitive functioning and aging studies which suggested a prevalence of 8.3% in those aged 65 years and above. ¹⁰ However, estimates of the number of people with dementia have been reassessed recently in light of the second cognitive functioning and aging study (2008–2011) which suggested the prevalence had fallen to 7.1%. ¹¹ This finding contributed to the latest expert group view that there are 686,000 people with dementia, including 40,000 with early onset dementia. ¹² Thus, the best estimate of diagnosis rate in 2013/2014 is 50% (344,000 out of 686,000) but uncertainties about both the numerator and denominator remain.

The diagnosis rate is reported to vary between Clinical Commissioning Groups from 39% to 75%, ¹³ though given the uncertainties, such estimates should be considered with caution. If real, they may reflect the availability and use of memory assessment services (memory clinics), established with the purpose of diagnosing dementia. Despite two national surveys^14,15 (and a third one underway), the extent of provision and waiting times remains unclear as does their effectiveness and efficiency. Due to differences in methodology between the two surveys, little is known about changes over time, though the mean number of people attending memory assessment services was reported to have increased by 24% from 2009/2010 to 2010/2011. ¹⁴ In 2012, the mean waiting time was 5.2 weeks, though recent anecdotal reports suggest this has increased in places. Interpreting data on memory assessment services is complicated by individuals increasingly being diagnosed within primary care rather than referred to specialist clinics.

Post-diagnostic healthcare

Three main strategies have been pursued with considerable success. First, the policy to reduce prescribing of anti-psychotic medication has had a dramatic effect. Although no national data exist, two providers of care homes reported that by early 2014 the proportion of their residents on anti-psychotics was only 10% (based on 900 residents in 15 homes) and 13% (based on 22,000 residents in 450 homes). Even lower use, 2%, was reported for care home residents in Islington, London. Similar low use of 8% among those living in their own homes has been reported from Buckinghamshire, based on 52 general practices. And among acute hospital inpatients the proportion admitted on anti-psychotic medication fell from 21% in 2010 to 11% in 2012 and those started on the drugs declined from 12% to 8%.^16,17

Second, while it is unclear whether provision and use of psycho-social therapies has increased since 2009, there is growing evidence as to their effectiveness. ¹⁸ There is good evidence that cognitive stimulation therapy benefits people with mild-to-moderate dementia, as well as improving their self-reported quality of life. Longer-term use also appears to have significant benefits and be cost-effective. Other therapies showing promise but with less scientific evidence include cognitive rehabilitation, cognitive behaviour therapy, music therapy and reminiscence therapy.

Third, prescribing of medications to alleviate dementia symptoms has increased 77% since 2010 reaching 2.549 million items by 2013. ¹⁹ Evidence of the clinical benefits of the main drugs (galantamine, donepezil, rivastigmine, memantine) is increasing though is limited by the short duration of trials, small effect sizes, the severity of dementia for which medications are effective and insufficient attention paid to potential adverse effects.

Hospital care

There have been improvements in the awareness of staff in acute hospitals about dementia and the needs of individual patients, following the establishment of senior clinical leads and attempts to create more dementia-friendly environments. For example, lower use of anti-psychotic medications will have reduced the risk of adverse incidents such as falls, Parkinsonism, accelerated cognitive decline and stroke.

Of approximately 15 million acute hospital admissions during 2012/2013, about 474,000 (3.1%) were recorded as having dementia. Since then acute hospitals have contributed to attempts to increase diagnosis rates, encouraged by financial incentives. Patients aged 75 years or more without a pre-existing dementia diagnosis and staying three days or more, must be assessed. By August 2014, after 16 months, the proportion of eligible patients being assessed had increased from 70% to 88% and, as a result, the proportion referred to memory assessment services after discharge has risen from 5.5% to 7.4%, amounting to over 50,000 referrals in 2014/2015. ²⁰

Between 2010 and 2012, the proportion of acute hospitals with a senior clinical lead for dementia rose (44% to 81%), as did the proportion with a dementia care pathway (6% to 36%).^16,17 However, progress appears slow in some trusts: 32% of trusts that claimed to be developing a pathway in 2010 had failed to establish one by 2012. Progress since then is unknown, though 143 National Health Service acute trusts (89%) and 24 non-acute trusts (36%) have committed to becoming ‘dementia-friendly’.

While clear evidence of any benefits from improvements in hospital care is not available, it is likely that these recent initiatives will have improved care for people with dementia. What is equally apparent is the scope for further improvement. A recent review suggested personal assessments were not identifying all of an individual’s care needs in 56% of hospitals and aspects of care in relation to mental health, emotional and social needs were poor in 42% of hospitals. ²¹

Healthcare staff training

A key aspect of improving hospital care involves staff training. Between 2010 and 2012, the proportion of hospitals with a strategy to identify the development needs of staff working with and caring for people with dementia increased from 23% to 78%; hospitals with mandatory training in dementia awareness for all staff rose from 5% to 59%; and hospitals with liaison teams from local mental health and learning disability services offering regular training for hospital staff increased from 39% to 65%.^16,17

To enhance these achievements, the National Health Service was required to ensure that 100,000 staff received dementia-awareness training during 2013/2014. This target was met within seven months. However, as with most other initiatives there is not yet clear evidence to determine benefits for patients with, or suspected to have, dementia.

Challenges ahead for National Health Service

The considerable achievements of the past five years have demonstrated the high level of interest and engagement of National Health Service staff in improving healthcare for people with dementia and their unpaid carers. Cost-effective roles that staff can play extend beyond direct help for those with dementia to helping their unpaid carers cope better. There are realistic opportunities to achieve further improvements in several aspects of care.

First, the diagnosis rate needs to increase. While the current rate of 50% may be an underestimation due to general practitioners’ registers being incomplete (something that the £55 financial incentive may correct before April 2015), there is still scope to increase the rate through greater awareness of early, mild forms of dementia in primary care. Better understanding of socioeconomic and ethnic differences in the way dementia presents may help. In addition, wider understanding is needed of the criteria for diagnosing dementia and distinguishing it from mild cognitive impairment.

Greater accuracy in estimations of diagnosis rates requires another rigorous population survey. However, the difficulty experienced by the most recent cognitive functioning and aging study (which achieved only a 56% response rate) would need to be addressed. Given the policy importance of establishing whether or not the incidence of dementia is changing, this is an epidemiological challenge that cannot be ignored.

Second, memory assessment services have developed in a way that has resulted in great diversity in services provided. Little is known about their effectiveness or productivity. Having allowed diversity in their development, there is now a need to understand how best to provide them to ensure maximum benefit. In particular, as primary care assumes greater responsibility for diagnosis and initial treatment, the role of specialist memory assessment services needs to be considered.

Third, despite large increases in the prescription of anti-dementia drugs, many individuals who could benefit are not yet doing so. This is also true for other post-diagnostic interventions. More evidence is needed on the cost-effectiveness of therapies. One area that needs particular attention is end-of-life care, including advance care planning.

Fourth, the benefits of staff training need to be demonstrated and the most effective methods of training identified. Despite the many pressures on trust boards and staff, awareness and understanding of the needs of people with dementia must not be marginalised or ignored. There is scope for many hospitals to become more dementia-friendly.

Fifth, although our focus has been on healthcare, solutions and improvements can only be achieved through better coordination with social care and voluntary sectors. The needs of people with dementia should be a priority for health and wellbeing boards. Coordination can potentially be facilitated by establishing better case management and involvement of key staff such as admiral nurses.

Finally, a recurring issue in reviewing both health and social care is the paucity of means to measure impact of policies and interventions. The need for methodological work to develop accurate but feasible ways of assessing functional status, mental health and quality of life of people with dementia and of their unpaid carers is crucial to the quest to ensuring that cost-effective initiatives are implemented. Without the ability to measure impact accurately, advancement of high quality care will be jeopardised.