1 Understanding and responding to
the scale and urgency of dementia |
1. 'Dementia' describes a range of progressive,
terminal brain diseases, affecting an estimated 600,000 people
in England. Age is the main risk factor and people with dementia
need a complex mix of health and social care services. People
with dementia require a complex mix of health and social care
which transcends all organisational boundaries. The number of
people with dementia in England is expected to double within 30
years and estimated total costs are expected to increase from
£15.9 billion in 2009 to £34.8 billion by 2026.
Most adults know someone who has dementia but the full scale and
extent of the problem is poorly understood.
2. In our 2007 report we identified there were
parallels between attitudes towards dementia now and cancer in
the 1950s, when there were few treatments and patients were commonly
not told the diagnosis for fear of distress. There are also stigmas
associated with mental health and older people's issues, which
present barriers to improving awareness, understanding and openness
about dementia. To date little has changed and indeed dementia
is one of the very few illnesses that people rate as worse than
death. Dementia is perceived as a worse illness to have than cancer,
and it is the fact that people do not talk about it because of
this stigma that has impeded change.
3. The total estimated direct cost of dementia
in 2009 was £10.1 billion (Figure 1), £1.93 billion
of which was borne by private individuals paying for care homes,
with the remaining £8.2 billion a direct cost to the NHS
and social care budgets. The bulk of the direct cost related to
provision of care in care homes.
Over the next two years, the NHS will receive 'flat real' funding,
that is the same level of funding received the previous year plus
some extra for inflation.
However demand, pay and expectations continue to rise and with
recent legal rulings on eligibility for Continuing Care funding
in favour of the claimants, there will be huge cost pressure on
the NHS. Indeed the
Department estimate that the overall cost of implementing the
new National Framework for Continuing Healthcare and NHS funded
Nursing Care in England in 2007 was £219 million. Significant
costs pressures have also been seen with regard to local authority
4. The NAO's initial report, Improving Dementia
Services in England (July 2007), found that dementia presented
a significant and urgent challenge to health and social care in
terms of numbers affected and cost, but little priority had ever
been attached to it. Stigma attached to older people and mental
health, combined with poor quality data and lack of effective
joint working across health and social care meant that services
were not delivering value for money to the taxpayer or to people
with dementia and their families. In particular, the report found
that spending was late, with too few people being diagnosed or
being diagnosed early enough. Early interventions that were known
to be cost-effective, and which would improve quality of life,
were not being made widely available. This resulted in spending
at a later stage on necessarily more expensive services.
1: Total estimated direct costs of dementia in 2009
Source: C&AG's report (2010), adapted from
Knapp et al (2007) Dementia UK and the King's Fund (2008) Paying
5. At our previous hearing in 2007, the Department
announced that dementia would now be a national priority and that
it would signal this to the NHS through the NHS Operating Framework.
It also announced that it would develop a National Dementia Strategy.
This five-year Strategy was launched in February 2009. The Department
acknowledged that dementia was the biggest challenge it had ever
faced, largely due to the complexities of joining up health and
social care departments and resources.
6. However, despite agreeing in 2007 that dementia
would be a national priority as important as cancer and stroke,
the Department did not include it in the December 2007 Operating
Framework in which stroke and cancer were listed as national 'Tier
1' indicators (Figure 2). Since then, two further NHS Operating
Frameworks have been published but dementia has still not been
included as a national priority. Rather it is mentioned as something
Primary Care Trusts (PCTs) may wish to consider taking action
on. One of the key outcomes of this failure to afford dementia
the priority status that we were led to believe it would be given,
was that progress in improving dementia services was not performance-managed
by the Department or Strategic Health Authorities.
7. In publishing the Strategy, the Department
announced that it was allocating £150 million revenue funding
to PCTs over the first two years of the Strategy to assist with
the Department stated that this funding was to help PCTs implement
the National Dementia Strategy, PCTs were completely free to decide
how to spend it.
It was unclear how the first year's funding of £60 million
had been spent, or indeed if it had actually been spent on dementia.
The Department only commenced commissioning a local audit of the
costs of dementia services in each PCT in December 2009,
and the results will not be available for several months. Each
PCT was also required to complete a baseline review of services
by March 2010, as set out in the revised Implementation Plan (July
2009). This could
have been undertaken as part of the Strategy's development, but
instead the initiative was launched in July 2009 and was not expected
to be completed until over a year after the Strategy's launch.
2: The NHS Operating Framework: Vital Signs Indicator Set
|Tier 1: A small number of 'must-dos', which apply to all PCTs
These are subject to performance management from the Department centrally. SHAs hold PCTs and NHS Trusts to account for these performance indicators and the Care Quality Commission assesses performance annually. Five Tier 1 indicators relate to cancer; two to hospital acquire infection; and one to stroke. Dementia is not mentioned.
|Tier 2: National priorities for local delivery|
The Department considers that concerted effort on these is required across the board but allows local organisations flexibility on how they deliver. SHAs hold PCTs and NHS Trusts to account for these performance indicators and the Care Quality Commission assesses performance annually. Dementia is not mentioned.
|Tier 3: Priorities determined and set locally|
These are a set of indicators from which PCTs can choose a small number to target local action and improvement effort. The Department does not performance manage these indicators, and the Care Quality Commission is not expected to include them in its annual assessments. SHAs need to be satisfied that PCTs have identified and are acting on a group of Tier 3 indicators. Learning disabilities has three specific Tier 3 indicators.
There are Tier 3 indicators relating to the timeliness of social care assessments and the proportion of carers receiving a 'carer's break' or other carer's service which link to dementia care, but dementia is not mentioned specifically.
Source: C&AG's Report (2010)
8. Overall, the Department had estimated that
the Strategy's implementation would cost some £1.9 billion
over 10 years and that this would be funded largely through efficiency
savings. These could be achieved by reducing the amount of time
that people with dementia spend in hospital when they no longer
have a medical need to be there, or by reducing premature entry
to care homes by providing better support in the community. These
savings could then be re-directed to other areas, such as early
diagnosis and intervention in people's own homes.
Achieving the required £1.9 billion of efficiency savings
will be a financial challenge on a scale the Department has never
It is dependent on the widespread adoption of good practice and
being able to release funding from the acute sector to other health
and social care settings, which has historically been very difficult
9. The Department explained how some prevention
schemes had led to up to a 49% reduction in emergency admissions
which had a considerable impact both on hospital costs and quality
of care for patients.
People with dementia who were admitted to hospital could have
a poor experience
because they were often not seen by a specialist in dementia.
There are major gaps in the provision of specialist older people's
mental health services such as multi-disciplinary psychiatric
liaison teams. The presence of these specialist services could
create an environment conducive to earlier discharge, or perhaps
even prevent admission in the first place.
This evidence and other examples of good practice were outlined
by the NAO in 2007 and could have been disseminated by the Department
and adopted by PCTs much earlier.
Instead, the Department waited until it had developed and launched
the Strategy before taking any action to disseminate good practice,
resulting in a whole year being lost.
3 C&AG's Report, para 1 Back
Qq 104 and 124; House of Commons, Sixth Report of Session 2007-08,
Improving Services and Support for People with dementia,
HC 228 Back
C&AG's Report, para 1.4 and Figure 4 Back
Qq 125 and 130 Back
Qq 78, 126 and 145 Back
Qq 130 and 131 Back
C&AG's Report, paras 34 and 35; Committee of Public Accounts,
Sixth Report of Session 2007-08, Improving Services and Suport
for People with Dementia, HC 228, para 23 Back
Qq 2, 3 and 4 Back
Q 157 Back
Qq 2, 4-8 and 23-29 Back
Qq 32 and 42 Back
C&AG's Report, para 15 Back
Qq 9-12, 42, 47-48 and 53; C&AG's Report, para 15 Back
Qq 39-40, 76, 78, 81, 131 and 155; C&AG's Report, para 15 Back
C&AG's Report, paras 7 and 8 Back
Qq 16, 18, and 127-128 Back
Q 17; C&AG's Report, para 8 Back
Q 40 Back
Q 73 Back
Q 82 Back
C&AG's Report, Session 2006-07, Improving Services and
Support for People with Dementia, HC (2006-07) 604, paras
Qq 34 and 35 Back