Integrated Strategic Needs Assessment

Local Strategic Review of Dementia

Corporate Research Joint Intelligence

Third Floor

Town Hall

Blackburn

BB1 7DY

Version 1.0 - 15th November 2011

1

Other

Mixed

VascularAlzheimer's

Dementia

1. Defining the issue

The term ‘dementia’ describes a syndrome involving a progressive decline in memory and reasoning, and in

the skills needed for communication and daily activities. These symptoms are caused by structural and

chemical changes in the brain as a result of physical diseases. The two main types of dementia are

Alzheimer’s disease, where the damage consists of a build-up of ‘plaques’, and vascular dementia, which

results from strokes or other disruption to the blood circulation in the brain. Those affected are typically, but

not exclusively, older people.

According to the influential Dementia UK1 report, Figure 1 - Causes of dementia

Alzheimer’s disease accounts for 62% of cases of dementia,

while 17% are vascular in origin, and a further 10% are a

combination of both. There are other rarer types of

dementia which account for the remaining 11% (see right).

However the government’s National Dementia Strategy2

cites evidence that up to half of all cases of dementia may

have a vascular component.

Video introductions to the different types and causes of

dementia can be found at

http://www.scie.org.uk/socialcaretv/video-

player.asp?guid={50B36F4E-1DA0-4E4A-BD05-

B1FF09D93F91} and at

http://www.alzheimers.org.uk/braintour

2. Why is this issue highlighted?

Challenges and shortcomings

The realisation of the sheer numbers and costs involved, both now and in the future, and of widespread

shortcomings in standards of care, has made dementia a national priority issue.

Table 1 – Numbers and costs - the dementia challenge nationally

Issue Now Future*

Numbers Estimated 560,000 people

with dementia in England3

Two-thirds of people in

care homes have dementia,

but

two-thirds of people with

dementia live at home.4

Up to 25% of people in

hospital at any one time have

dementia3,4

↑ Rising by 40% in 15 years3, doubling in 30 years5

Source: Alzheimer’s Society4

Source: Dementia UK1

* NB – rates of increase in Blackburn with Darwen may not be as high as in England or UK overall

2

Care home costs (self-

funded) £1.93bn Community

costs (Social Services) £2.37bn

NHS costs

£1.3bn

Care home costs (Soc

Serv) £4.49bn Direct costs

£10.1bn

Informal care costs

£5.8bn

Issue Now Future*

Costs

Direct costs £10.1bn p.a., plus £5.8bn for informal care5

Costs of dementia, England, 2009

Source: National Audit Office5

Far outweighs total cost of Cancer and CVD combined6

Equates to over £25,000 p.a. per dementia patient3

Others estimate the cost of informal care (i.e. unpaid carers) to

be even higher, at £12.4bn6

↑ More than

doubling by 20265

* NB – rates of increase in Blackburn with Darwen may not be as high as in England or UK overall

Table 2 – national shortcomings in dementia services

Issue Shortcomings

Diagnosis

Only a third to a half of dementia patients ever receive a formal diagnosis3

Despite strong arguments in favour of early diagnosis of dementia7, patients are often deterred by fear and ignorance, and GPs may also be ambivalent and lacking in confidence in their ability to diagnose the condition3

Home

care

Half of people living at home with dementia receive substandard care8

In a fifth of such cases, this precipitates earlier admission to residential care8

52% of carers receive inadequate support, with repercussions for their own health8

Home care staff feel they need more dementia training8

Care

homes

The sector now caters for people with much more complex physical and mental problems than 30 years ago, but these changes have not been planned for9

62% of residents have dementia, but only 28% of provision is registered for dementia10

Care home residents with dementia often have insufficient activity and interaction2

The (over-)use of anti-psychotic drugs in some care homes to control the behavioural and psychological symptoms of dementia is a particular concern2

Hospital

care

Dementia often goes unidentified, or staff caring for the patient are not informed11

People with dementia stay in far longer, to detriment of physical and mental health12

42% of patients with dementia lose weight while in hospital11

Few hospitals have mandatory dementia awareness training for all clinical staff11

Anti-

psychotic

drugs

Only a fifth of those prescribed anti-psychotic drugs for dementia are estimated to benefit from them9

The current level of prescribing is estimated to be responsible for 1800 deaths per year9

Table 1 cont.

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The policy context

The realisation of the challenges and shortcomings surrounding dementia has resulted in a flurry of policy

development since 2007:

Figure 2 - Main policy developments since 2007

Ref

1

3

2 *

13

9

5

14

15

16

17

18

19

* See Appendix for the National Dementia Strategy’s 17 objectives

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Top priorities

The four top priorities considered by DH as likely to have the greatest local impact in the new political and

economic landscape are listed in Box 1:

Box 1 - DH's top priorities

Good-quality early diagnosis and intervention for all;

Improved quality of care in general hospitals;

Living well with dementia in care homes; and

Reduced use of anti-psychotic medication.

Source: Quality outcomes for people with dementia (2010)16

3. Who is at risk and why?

Age as a risk factor

By far the most significant risk factor for dementia is age. The most widely accepted estimates of the true

prevalence of dementia were compiled by a group of experts for the Dementia UK1 report in 2007, and age

and gender are the only factors taken into consideration:

Table 3 - Dementia UK estimates of prevalence of late-onset dementia

The same report also contains prevalence estimates for early onset dementia (below age 65), but this is so

rare that the rates are expressed per hundred thousand. For example, the highest rate in Table 4 is 198.9 per

100,000, which equates to only 0.2% :

Table 4 - Dementia UK estimates of prevalence of early-onset dementia (per 100,000)

Dementia UK does acknowledge that the (approximately nine-fold) leap between the rates for 60-64 year

olds and those for 65-69 year olds is rather hard to believe. The authors admit that their estimates for under-

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65s may be anything up to three times too low. This arises because the only available evidence on early

onset dementia comes from those who are known to local service providers. Research studies on the older

age-group can afford to take a random sample of the population and screen them for signs of dementia, but

the condition is so rare under the age of 65 that this approach would not be practicable. It remains possible,

therefore, that there is a ‘hidden’ problem of early onset dementia which is not reflected in Table 4.

Ethnic group

Dementia UK1 draws attention to the fact that 6.1% of all people with dementia in BME groups are young

onset (under 65), compared with 2.2% for people with dementia generally. However, the authors attribute

this to the younger than average age profile of the BME community. They had no specific evidence regarding

the prevalence of dementia by ethnic group, so they based their estimates on age and sex alone.

The report does predict that as first generation migrants enter old age, that in itself will cause the numbers

of BME people with dementia to increase much faster than for the population as a whole. We will be able to

gain a clearer picture of this likely increase when population projections by ethnic group are released later

this year by Leeds University.20

Deprivation

Similarly, there is a lack of hard evidence as to whether deprivation is a risk factor for dementia. The Public

Accounts Committee in 200810 heard that dementia crosses the class divide. However, this may be because

more affluent people are more likely to live to the sort of age where the dementia risk is highest.

Lifestyle factors

The Alzheimer’s Society’s advice on risk factors for dementia21 conveys essentially the same healthy lifestyle

message as we would find in any other context – encouragement of exercise and a healthy diet, and

avoidance of smoking, obesity, excess alcohol, and consequences such as hypertension and diabetes. This is

very much the same guidance as would be given for promoting good cerebrovascular health.

The National Dementia Strategy2 backs this up with evidence that up to 50% of dementia has a vascular

component, and introduces the slogan: “what’s good for your heart is good for your head”. The rationale is

that following a healthy lifestyle can only be a good thing, and letting it be known that this might help to

reduce the risk of developing dementia, as well as other conditions, may provide an important added

incentive.

4. Level of need in the population

Nobody knows the true rate or number of people in Blackburn with Darwen living with or developing

dementia, so it must be stressed that everything in this section is an estimate.

Prevalence at age 65 and above

The Dementia UK1 prevalence rates in Table 3 are used in Dementia UK itself, and also by APHO22 and

POPPI23, to derive local estimates and projections of the number of people with dementia. All of these

predictions assume that the rates remain static, and apply them to the ONS population projections. This

seems a reasonable thing to do, as nobody knows how the rates may be expected to change over time.

Table 5 shows the POPPI estimates, as these have been updated to use the latest 2008-based population

projections, and are also the most convenient to access:

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Table 5- People aged 65 and over predicted to have dementia, by age and gender, projected to 2030

Blackburn with Darwen 2010 2015 2020 2025 2030

People aged 65-69 predicted to have dementia

65 80 75 78 89

People aged 70-74 predicted to have dementia

123 126 156 145 158

People aged 75-79 predicted to have dementia

212 223 228 286 275

People aged 80-84 predicted to have dementia

315 335 359 379 486

People aged 85-89 predicted to have dementia

328 322 361 417 456

People aged 90 and over predicted to have dementia

209 240 268 357 447

Total population aged 65 and over predicted to have dementia

1,251 1,326 1,446 1,662 1,910

Source: POPPI

Dementia UK gives slightly higher figures for BwD, which might be because there is an additional twist to

their methodology involving numbers of care home residents. This could be relevant if we believe that older

people with dementia are migrating into BwD to take up places in its care homes, but the method is not

explained fully enough for others to replicate.

POPPI provides a breakdown by gender as well as by age, allowing us to see how the age/sex profile of BwD

residents with dementia is expected to change from 2010 to 2030:

Figure 3 - Estimated age/sex profile of BwD residents aged 65+ with dementia (2010 v. 2030)

Source: POPPI

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Dementia at age 65 and above - prevalence compared with England and North West

If we express the number of people aged 65+ estimated to have dementia as a percentage of either (a) the

entire population or (b) the 65+ population, we can see that this proportion is lower in Blackburn with

Darwen than in the North West or England generally, and is predicted to remain so:

Figure 4 - Estimated 65+ population with dementia as % of (a) total population, (b) 65+ population

Source: POPPI and PANSI

By constructing an index, we can compare the expected rate of growth in absolute numbers of people aged

65+with dementia. The 2010 count is given an index of 100, and the counts for subsequent years are

expressed relative to that (e.g. the BwD index for 2030 is 153, because the number of cases by then is

expected to be 53% higher than in 2010). It can be seen that Blackburn with Darwen does not expect as fast a

rate of growth as other places:

Figure 5 - Expected rise in number of people aged 65+with dementia (Index, 2010 = 100)

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Prevalence of early onset dementia

What is early onset dementia?

By definition, dementia occurring below the age of 65 is referred to as early onset dementia or young onset

dementia. People of this age account for only an estimated 2.2% of all those with dementia in the UK1, and

the breakdown by type of dementia is different to that found in the older (or general) population:

Table 6 - Types of dementia occurring below age 65

Source: Sampson et al24, after Harvey et al25

Alzheimer’s disease accounts for a smaller proportion of people with dementia in this age-group than it does

at older ages, and when it does occur there is often a genetic cause.1 Vascular dementia in people under 65

may also be familial in origin.24 Frontotemporal dementia (including Pick’s disease), is a rare condition

affecting the front of the brain, but those who do develop it are often under 65. In common with several of

the other types of early onset dementia (and in contrast to Alzheimer’s disease), the first symptoms of

frontotemporal dementia tend to be changes in behaviour and personality rather than memory problems.1,,26

Younger people can also develop even rarer types of dementia due, for example, to substance abuse (e.g.

alcohol-related dementia), prion disease (e.g. Creutzfeldt-Jakob disease), neurological disorders (e.g.

dementia in Multiple Sclerosis or Parkinson’s disease), or inherited conditions (e.g. Huntington’s Disease).

People with Down’s syndrome make up a small percentage of the total number with early onset dementia,

but Alzheimer’s disease is a major issue for this group. It has been estimated that by the time they reach

their fifties, over a third are affected, rising to over half of people with Down’s syndrome in their sixties, and

that virtually all will develop the physical plaques of Alzheimer’s disease (even if they remain symptom-free).

Learning disabilities other than Down’s syndrome are also associated with a raised prevalence of early-onset

dementia, estimated at 13% of those over 50.27

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Prevalence estimates

The Dementia UK1 report also provides estimates of the prevalence rates for the under-65 age-group, which

range from under 1 in 10,000 below the age of 40, to 1 in 500 for males aged 60-64. Applying these rates to

the population projections for Blackburn with Darwen produces the following estimated numbers:

Table 7 - People under 65 predicted to have early onset dementia, by age and gender, projected to 2030

Blackburn with Darwen 2010 2015 2020 2025 2030

People aged 30-39 predicted to have dementia 2 2 2 2 2 People aged 40-49 predicted to have dementia 4 4 4 4 4 People aged 50-59 predicted to have dementia 15 16 18 17 15 People aged 60-64 predicted to have dementia 11 11 11 13 13 Total population aged under 65 predicted to have dementia

32 32 34 34 34

Source: PANSI

However, Dementia UK itself acknowledges that its estimated rates of early onset dementia may be anything

up to three times too low, so the actual number in Blackburn with Darwen could be closer to 100.

Recorded (QOF) prevalence – all ages

Since 2006-07, GPs have been incentivised under the Quality and Outcomes Framework (QOF) to keep a

register of patients with dementia (regardless of age). However it is widely acknowledged that a large

proportion of people with dementia are still missing from these registers.

In Blackburn with Darwen, the percentage of all patients included on the QOF dementia register has been

more or less static ever since it was introduced, at 0.4%. In 2009-10, that represents 698 patients out of

166,999 on the lists of Blackburn with Darwen GPs.

At the practice level, there is wide variation in this indicator, but that is partly to be expected due to the

very different age distributions of practices. In Figure 6, the practices have been arranged in groups, so that

Groups 1 and 2 consist of the practices with the youngest age profiles, highest deprivation and highest

proportion of Asian patients. Groups 3, 4 and 5 serve successively more affluent populations which are

mostly white, with a higher average age.

Figure 6 – Variation in crude

recorded prevalence (as percentage

of entire list), BwD practices

Source: NHS Comparators

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Recorded versus expected prevalence

Given that the expected prevalence (as calculated by POPPI, APHO or others) is the nearest thing we have

to a ‘true’ prevalence, it is generally desirable for the ratio of recorded (QOF) to expected prevalence to be

as high as possible - ideally close to 1. Driving up this ratio is one way of helping to fulfil Objective 2 of the

National Dementia Strategy2 : ‘Good-quality early diagnosis and intervention for all’. It is one of the

measures included in the Lancashire Multi Agency Outcomes Framework for Dementia 28, to which

Blackburn with Darwen BC and NHS Blackburn with Darwen are co-signatories.

The NHS Comparators website provides this ratio ready-calculated for every practice and PCT. It works out

the ‘expected’ number by applying the Dementia UK1 age- and sex-specific prevalence rates to GP practice

lists, and then compares the number of people on the QOF register with this figure. Blackburn with Darwen

achieves a ratio of 0.45, putting it just within the top quintile of PCTs:

Figure 7 - Ratio of recorded (QOF) dementia prevalence to expected prevalence (PCTs, 2008/09)

Source: NHS Comparators

At the practice level within BwD, there is again wide variation in this indicator. However this variation is less

clearly related to the practice groupings, probably because the ratio already takes account of age. Group 1

practices (those with the highest proportion of Asian patients) do tend to have a below-average ratio, but

the expected number (itself only a ‘guesstimate’) is below 30 in all these practices, and often below 20. One

diagnosis either way can therefore make a big difference to the ratio.

Figure 8 –Variation in ratio of recorded to expected prevalence, BwD practices

Source: NHS Comparators

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Incidence

The incidence rate is number of new cases of dementia developing in a given population in a given space of

time (such as a year). It is therefore of interest to those who have to plan services for diagnosis and initial

treatment. As with prevalence, much of the true incidence of dementia is hidden.

Estimated incidence of late-onset dementia

The main body of research attempting to uncover the true incidence rate for dementia at age 65 and above

is the Cognitive Function and Ageing Studies (www.cfas.ac.uk), a series of long-term studies across England

and Wales. The scope of the research does not extend to early-onset dementia, probably because the sample

size needed to uncover new cases by following people through time would be prohibitively large.

The estimated incidence rates are shown in Figure 9. For example, out of every 1000 women aged 85+ not

already affected by dementia, 72 would be expected to develop it in the course of a year. However these

estimates are subject to considerable uncertainty, as indicated by the very wide confidence intervals:

Figure 9 – Dementia incidence rates per 1000 person-years, by sex and age-band (age 65+)

Source: CFAS (2005)29

Simply applying the CFAS rates to Blackburn with Darwen’s population projections gives an estimated 354

new cases in 2010, rising to 527 new cases in 2030. However, these will be slight over-estimates, as a

proportion of people in each of the older age-groups will already have dementia, and should be discounted.

Likely demand for diagnostic services

Incidence rates are an important determinant of the number of referrals to a Memory Assessment Service -

i.e. a service set up to provide diagnosis and initial treatment of dementia. However, services deal with

demand rather than need, so this caseload will also depend on other factors, such as the willingness of

people to come forward for diagnosis, and the proportion (roughly half) who do attend but are then found

not to have dementia.

NICE suggests30 that as a simple rule of thumb, a typical Memory Assessment Service should plan to handle a

caseload of 0.19% of its entire GP-registered population each year. This proportion will vary according to the

local demographic profile, but something between 0.12% and 0.26% should be appropriate in 90% of PCTs.

Based on the current registered population of Blackburn with Darwen, that equates to anything from 181 to

393 referrals per year, but with its youthful age structure, BwD may expect to be towards the lower end of

the range. The NICE guidance does caution, however, that any new service may encounter higher demand to

start with, as it works through the backlog of existing undiagnosed cases.

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5. Good practice

Early diagnosis and intervention

Commenting on the low rate of diagnosis of dementia, the National Audit Office3 remarked in 2007:

“Parallels can be dawn between dementia now and cancer in the 1950s, when there were few treatments and

patients were commonly not told the diagnosis for fear of distress”.

Objective 2 of the National Dementia Strategy2 is ‘Good-quality early diagnosis and intervention for all’, while

there is still time for the person affected to make choices, and services can be put in place to improve quality

of life. The Strategy argues that early diagnosis and service provision will pay for itself by reducing the need

for care home admission or other crisis intervention at a later date. It advocates the roll-out of dedicated

‘memory services’ which can provide an expert diagnosis, convey it sensitively to the person with dementia

and their family, and initiate the provision of appropriate information, support and care.

As part of the drive towards good-quality diagnosis, there will be a new QOF indicator from April 2011

recording whether each patient newly entered on the dementia register has had a standard battery of blood

and other tests, to exclude the (remote) possibility that there is a reversible explanation for their symptoms.31

A 4-page parliamentary briefing on ‘Diagnosing Dementia’32 gives a valuable introduction to the diagnostic

tools available, the arguments for and against early diagnosis, and the barriers to be overcome.

Housing support and telecare

Housing support and telecare is an emerging area in which the National Dementia Strategy2 stops short of

making specific recommendations. Objective 10 does however urge commissioners to keep abreast of

developments in this field which may help to prolong independent living for people with dementia.

Extra Care housing

The term ‘Extra Care’ generally refers to sheltered housing with the additional benefit of 24/7 care provision,

and (in all but the smallest developments) a range of communal facilities including a restaurant, a

hairdressers and a ‘wellbeing suite’ offering a range of therapies.

The National Dementia Strategy2 suggests that people with dementia can benefit from Extra Care housing,

but acknowledges that the research base is limited. The National Audit Office5 cautions that over half of

people with dementia in Extra Care housing will be transferred elsewhere in the course of two years due to

challenging behaviour, distress, and conflicts with staff and other residents. The ‘Enriched Opportunities

Programme’, involving enhanced staff training, leadership and engagement, is one approach to trying to

reduce this turnover and the costs that go with it.33

For more on housing options for people with dementia, including Extra Care, see

www.dhcarenetworks.org.uk/IndependentLivingChoices/Housing/Topics/browse/HousingandDementia/

Telecare

Telecare (or assistive technology) has moved a long way from simple pendant alarms, although of course

these are still important. There are now remote sensors which can detect heat, prolonged cold, smoke,

carbon monoxide, gas, flooding (e.g. if a tap is left on), bed-wetting, falls, fits or lack of movement; devices

which can tell whether the person has gone in or out of the house or through a door, got up, gone to bed or

moved in or out of their chair; and dispensers which remind them to take their medicine. An alert can be

raised with the call centre or emergency services as appropriate. A collection of resources explaining how

telecare can assist people with dementia can be found at http://www.dhcarenetworks.org.uk

/IndependentLivingChoices/Housing/Topics/browse/HousingandDementia/Provision/AssistiveTechnology/

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Personal budgets and direct payments

The National Dementia Strategy2 states: “People with dementia need to be able to benefit from initiatives

such as direct payments, individual budgets and personalised services as much as other people.”

Numbers of people with dementia receiving personal budgets and direct payments are not separately

recorded, but are understood to be generally low. One barrier to their use was however removed in

November 2009, when it became possible to make direct payments to a carer on behalf of a person who

lacks the mental capacity to consent to receive and manage them34. There are a few resources on the

web specifically about the personalisation agenda as it relates to dementia:

Alzheimer’s Society: Factsheet 473 – Direct Payments, at

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=141;

Position Statement on Personalisation (with further useful links at end), at

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1557

Mental Health Foundation: Dementia Choices – a 2-year project to explore and promote self-

directed support such as direct payments and personal budgets for people living with dementia and

their carers. See http://www.mentalhealth.org.uk/our-work/older-people/dementia-choices/

Putting People First: Dementia – increasing awareness and uptake of direct payments and personal

budgets. See http://www.puttingpeoplefirst.org.uk/Regions/eastern/resources/overview/?cid=8481

Ethnic minority communities and dementia

The Alzheimer’s Society presents research evidence that people from South Asian communities may have

low awareness and understanding of dementia, and a tradition of caring for relatives with dementia ‘behind

closed doors’ rather than engaging with dementia services.35 Attempts to raise awareness may come up

against issues of stigma, as well as language barriers; the point is made that none of the five main South

Asian languages has a word for ‘dementia’.36 A recent paper from the Social Care Institute for Excellence

(SCIE) also explores the needs of BME people with dementia, and their access to support and services, but

observes that the research base is very limited.37

An example from Bradford of an initiative set up to respond to the difficulties encountered by South Asian

communities in the city is the award-winning Meri Yaadain (‘my memories’) project, whose website can be

found at www.meriyaadain.co.uk.

Case studies

A recent publication from Age UK provides local examples from across the country of best practice initiatives

providing support and services to people living with dementia and their carers. Living life with dementia 38

(www.ageuk.org.uk/documents/en-gb/for-professionals/care/living%20life%20with%20dementia_pro.pdf)

shows how Age UK is helping to turn the aspirations of the National Dementia Strategy into practical reality,

and includes several case studies from the North West.

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6. Current services / initiatives

Memory Assessment Service

The newly expanded Memory

Assessment Service at Burnley General

Hospital, jointly funded by NHS East

Lancashire and NHS Blackburn with

Darwen, was launched in September

2009:

Figure 10 - launch of the new East

Lancashire Memory Assessment Service

The enhanced service can see people more quickly, offer more specialist assessment, and provide a range of

interventions. With a team drawn from medicine, nursing, occupational therapy, psychology, pharmacy and

other fields, its stated aims are:39

To transform current memory assessment services by developing a new model of care, informed by joint commissioning with East Lancashire and Blackburn with Darwen PCTs, to meet the needs of known and hidden people with dementia and the predicted future demand;

To provide a local single access point for all cases of suspected dementia;

To provide timely, high quality specialist assessment for all accepted referrals;

To provide of a range of person-centred interventions to maximise ability and promote and maintain independence;

The service to be available to all people with suspected dementia regardless of age.

Housing support and telecare

Extra Care housing

Blackburn with Darwen will soon have just over 200 units of Extra Care housing, spread across seven

schemes. The smallest, Cottonspinners Court, contains only six units and is exclusively for people with

dementia. There are also residents with dementia living in the other complexes, having either developed the

condition there or moved in afterwards (at the discretion of the panel which oversees admissions).

When Blackburn with Darwen opened its first few Extra Care housing units, it envisaged an eventual need for

over 500 units. However we are reviewing this figure in the light of more recent intelligence. Demand may be

expected to rise as the local population ages, and as alternatives to the care home option are increasingly

sought. However this will be offset by the fact that assistive technologies are making it increasingly feasible

for people to stay in their own home for longer. Blackburn with Darwen continues to look for the best

accommodation solutions for people with dementia.

Telecare

Telecare was slow to take off in Blackburn with Darwen, with only 60 products installed by the Council up to

April 2010. A strategic decision was then made to invest in assistive technology, and by the end of 2010-2011

it is expected that 400 new units will have been installed, several of them for people with dementia.

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Families approaching the service are often on the point of requesting residential care, but simple telecare

solutions have proved to be very successful at allaying their fears about whether their relative is wandering

at night, going to bed, remembering to eat, and so on. The team is about to invest in a ‘Just Checking’

system, which monitors all these things for a limited period, making it easier to identify which (if any) devices

need to be installed long-term. A training ‘smart room’ has been set up to familiarise social workers with the

technology available, so that they are aware of the options when carrying out a needs assessment.

The service is meeting all the demands placed upon it, and is popular with customers, who welcome the non-

intrusive aspects of telecare, and the opportunity it gives them to stay in their own homes for longer.

Care home provision

Proportion of age-group supported

As Dementia UK1 points out, there are no local

authority level figures specifically about social

services provision for older people with mental

health problems. They therefore had to draw

conclusions about the level of care home usage

based on the percentage of all older people living

in such accommodation.

When Dementia UK looked at the 2005 figures,

residential care home provision in Blackburn with

Darwen, per head of the over-65 population, was in

the top 10% in terms of both numbers and

expenditure. Since then, the proportion of the age-

group supported to live in care homes has fallen,

but it remains above average (Figure 11).

The proportion of over-65s supported in care

homes in BwD is in fact the fifth highest in England (Figure 12):

Figure 12 - proportion of over-65 population supported by local authority in residential care, 2009/10

Registered dementia care beds

The Care Quality Commission is changing its registration system for care homes, but the old system40 showed

12 homes in Blackburn with Darwen to be registered for dementia care as at summer 2010. Between them

these homes have 519 places, or 41.5 for every 100 people over 65 in BwD predicted to have dementia. This

capacity compares with an average of 38.0 per 100 in the North West, and 38.2 in England41. However, not all

these beds will be occupied by people with dementia (or are even intended to be, as dementia may not be

the only specialism for which a home is registered).

BwD

Figure 11 - proportion of over-65 population supported

by local authority in residential care

Source: NASCIS

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Hospital admissions

There are relatively few hospital admissions in Blackburn with

Darwen each year where dementia is the primary diagnosis,

and those which do occur are mostly emergency admissions:

Figure 13 - Hospital admissions age 65+ with primary

diagnosis of Dementia (ICD codes F00-F03),

Blackburn with Darwen 2007-08 to 2009-10

Using the POPPI/PANSI prevalence estimates as a denominator, this equates to 1.2 such admissions in

2009/10 per 100 people aged 60+ with dementia, compared with an England average of 2.2.42

Most patients admitted with dementia are in hospital for some other reason. The number of admissions with

dementia as a primary or secondary diagnosis has been rising steeply, which suggests that greater care is

being taken to record secondary diagnoses of dementia. Again, the vast majority are emergency admissions:

Figure 14 – Hospital admissions age 60+ with primary or

secondary diagnosis of Dementia (ICD codes F00-F03),

Blackburn with Darwen 2007-08 to 2009-10

Dementia drugs (therapeutic)

Figure 15 - Dementia drugs: Average Daily Quantities prescribed each month

per dementia patient on QOF register in Blackburn with Darwen*

There are four

drugs which can

help to relieve the

symptoms of

dementia. In

Figure 15, their

usage in Blackburn

with Darwen is

expressed in terms

of the number of average daily doses prescribed by GPs

each month, divided by the number of dementia patients

on the QOF register, and tracked over two years.

NICE has recently relaxed its stance that the patient must wait for their disease to worsen before these drugs

can be prescribed, by announcing that memantine can be used for moderate dementia, and the other drugs

for mild dementia. In Figure 15, it is too soon to discern any effect of this change.

Comparison with England would not be meaningful, because EPACT data covers primary care prescribing only.

GPs prescribe the bulk of dementia drugs in Blackburn with Darwen, but this is not the case in every PCT.

(Emergency admissions in brackets)

Source: EPACT via Primary Care Informatics Unitit

0

2

4

6

8

10

12

14

16

18

20

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9

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MemantineHydrochloride

Rivastigmine

Galantamine

DonepezilHydrochloride

* as at end July 2010

17

7. Gaps

Anti-psychotic drugs

It is now generally recognised that the widespread use of anti-psychotic drugs to treat behavioural and

psychological symptoms in dementia is likely to do more harm than good. In Quality Outcomes for People

with Dementia16, the Government calls for the use of anti-psychotic drugs for dementia patients to be

reduced by two-thirds within two years of establishing a baseline position.

As a first step, a baseline audit was undertaken in February 2011 in 24 of Blackburn with Darwen’s 30

practices.43 This consisted of a trawl of electronic patient records, looking for patients who had been

administered one (or more) of a list of 13 antipsychotic drugs in the past year. These drugs are typically used

in dementia, but can also be prescribed for other reasons.

The audit found 241 patients aged 65 or above who had been prescribed these drugs. Only 56 of them were

coded as having been diagnosed with dementia, so the others presumably have dementia which has not

been formally diagnosed and recorded, or else are receiving the drugs for a different reason. At just over ten

such patients per practice, Blackburn with Darwen appears to sit comfortably within Government

expectations of approximately nine patients in this age-group on anti-psychotics per individual GP.9

A more detailed, form-based audit of all practices will commence later in 2011, asking GPs to specify which

patients are receiving anti-psychotics to treat the symptoms of dementia, and encouraging them to

commence gradual withdrawal of these drugs and to resist prescribing them for any new dementia patients.

Ethnic minority communities and dementia

As already observed, the research base on the needs of BME people with dementia, and their access to

support and services, is very limited.37 Along with voluntary sector and academic partners, Blackburn with

Darwen is currently putting together an outline bid for NIHR research funding to address this information

gap. The envisaged research project would follow a qualitative, action research approach, engaging service

users, community members, health and social care workers in identifying barriers to quality support, and

developing new approaches that are effective, accessible and appropriate for particular ethnic groups. The

possibility of researching dementia prevalence in BME communities is also being explored.

Dementia services – mapping the gaps

A Task and Finish Group was set up in Blackburn with Darwen in 2010 to examine existing dementia services

in the borough, compare with the National Strategy, and define priorities for addressing any gaps. To help

organise its thoughts, it used a giant printout of the dementia pathway diagram found in the Lancashire

Multi-Agency Outcomes Framework for Dementia.28 Members of the Task and Finish Group attached post-it

notes representing the agencies and issues involved at each stage, based on current service provision.

The original diagram is too long and thin to fit in this document, but has been adapted to form Figure 16. The

blue boxes connected by arrows represent the stages in the pathway, the yellow boxes represent the post-it

notes attached to them, and the red boxes indicate the pre-and post-diagnosis priorities which the Task and

Finish Group identified as a result of this exercise.

A further priority, not confined to any particular stage in the pathway, was identified around the issue of

physical health needs, and how these are met by emergency, hospital, community and end-of-life care.

Suggested actions to help meet the identified priority gaps were presented to the Health and Wellbeing

Partnership Board. A Project Manager is now being recruited to take this work forward, and when that post

has been filled a Steering Group will be set up to oversee the redesign of services.

18

Figure 16 - Dementia Process Map as used by BwD Task & Finish Group, showing post-it notes (yellow) and

identified priorities (red)

19

8. Value for money

Programme Budgeting data

‘Programme Budgeting’ data from DH allows us to compare expenditure on 23 major ‘programmes’ of NHS

activity. Mental Health is one of these programmes, but it is the ‘Organic Mental Disorders’ sub-category

which is of most relevance, as that is where Dementia sits. In Figure 17, BwD’s expenditure on Organic

Mental Disorders is compared with England and with the ‘cluster’ of 19 similar PCTs to which it belongs,

called ‘Centres with Industry’. Spending is expressed per head of Unified Weighted Population, an artificial

headcount, scaled up or down to reflect local need:

Figure 17 - Organic Mental Disorders (including Dementia) - NHS Expenditure 2006/07 - 2009/10

Source: Programme Budgeting Benchmarking Workbook (DH)

The adjustment for need which is built into the Unified Weighted Population reflects overall health need, so

it inflates BwD’s real population for reasons which have nothing to do with older people and dementia. Also,

Mental Organic Disorders was only introduced as a sub-category in 2006/07, and the data may not have been

very reliable to start with. Even so, it is striking that BwD’s ranking for NHS spend per 100,000 Unified

Weighted Population has dropped from 71stth in 2006/07 to 136th in 2009/10 (i.e. it is now 17th lowest, out of

152 PCTs).

QIPP

QIPP is the government’s programme of initiatives to improve the efficiency of NHS services by enhancing

Quality, Innovation, Productivity and Prevention. A sub-regional (or ‘Level 3’) Dementia QIPP, led by

Blackburn with Darwen, aims to boost Lancashire-wide liaison and coordination on: nursing and care home

provision; support for people with dementia in acute care; and dementia prescribing. The programme will be

developed and agreed during the remainder of 2011, to be implemented from 2012 onwards.

20

9. Involvement

Engagement at a national level

Person-centred outcomes

Direct engagement with people with dementia and their carers has been an important input to the National

Dementia Strategy2 and other recent policies. Arising out of this work are not one, but two lists of outcomes

desired by people with dementia and their carers, and expressed in their terms (see Figure 18). DH is

currently signed up to both lists, but work is under way to try and bring them into alignment.

Figure 18 - Outcomes desired by people with dementia and their carers

From Quality outcomes for people with dementia16 From National Dementia Declaration17

Engagement at a sub-regional level

The Lancashire Multi Agency Outcomes Framework for Dementia28 (www.lancashire.gov.uk/corporate/web/

viewdoc.asp?id=54800). is structured around another set of person-centred outcomes, arising from

engagement work across Lancashire with people with dementia, their carers and support groups. The Council

and NHS in Blackburn with Darwen are co-signatories to it, and DH cites it as an example of good practice.18

Engagement at a local level

Anticipating Future Needs, 2008

In 2008, Blackburn with Darwen Borough Council and PCT commissioned the Institute of Public Care (IPC) at

Oxford Brookes University to assist on a local consultation about ageing using the IPC’s ‘Anticipating Future

Needs’ toolkit44. Four focus groups were held with people aged 55-65, exploring their attitudes to growing

older over the next fifteen years, each of which spent approximately 45 minutes discussing dementia.

In line with national findings, most local participants had assumed there was no alternative to residential

care for dementia. They had little knowledge of the support that could be offered in the community, such as

assistive technologies. On learning that a care home was not the only option, some said they would prefer to

I was diagnosed early

Those around me and looking after me are well supported

I can enjoy life

I am treated with dignity and respect

I understand, so I make good decisions and provide for future decision-making

I feel part of a community, and I’m inspired to give something back

I get the

treatment

and support

which are

best for my

dementia

and my life

I know what I can do to help myself and who else can help me

I am confident my end of life wishes will be respected. I can expect a good death.

I have personal choice and control or influence over decisions about me

I know that services are designed around me and my needs

I have support that helps me live my life

I have the knowledge and know-how to get what I need

I live in an enabled and supportive environment where I feel valued and understood

I have a sense of belonging and of being a valued part of family, community and civic life

I know there is research going on which delivers a better life for me now and hope for the future

21

stay at home for as long as possible, but others felt that residential care might provide more stimulation and

lessen the burden on their partners and family. There was an appreciation that care homes differed in

quality, and that some could provide a good social life as well as high quality care. South Asian respondents,

however, were particularly reluctant to go into residential care, and felt that if this had to happen, it was

essential that carers should speak their language and appreciate their culture. There was a consensus that all

would want specialist care if they developed dementia, and to be treated with dignity and respect.

Dementia Strategy Workshop, 18th July 2011

Engagement is considered to be an integral part of the strategic needs assessment process, and dementia

was the first topic to be the subject of a special-purpose Strategy Workshop, overseen by the Health and

Wellbeing Board. The stated objective of this event was: ‘To provide an overview of local work on dementia,

identify and prioritise gaps, and ensure coordinated strategy development and action planning’.

The workshop was attended by 25 people, eleven of them ‘from the community’, including one person with

dementia, carers, voluntary workers, elected members and those with a professional interest. After an

overview of an earlier draft of this document, and an introduction to current NHS and social care provision

for dementia, attendees split into groups to consider the following questions:

What are we doing that is working and needs to continue?

What are the key gaps in knowledge/services and how do we fill them?

What should we be doing next, and what are our key actions?

The findings of these discussions have been collated, analysed and crystallised into the set of approved

recommendations listed below.

10. Recommendations

The following priorities emerged from the recent Dementia Strategy Workshop, and were agreed by the

Health and Wellbeing Board on 17th August 2011:

Immediate actions

a. As a result of work done in autumn 2010, a new Project Manager for dementia and mental health

pathways has been recruited, to start early October 2011.

b. Drive forward the work planned to meet the national target to reduce inappropriate use of anti-

psychotic drugs in people with dementia by March 2012.

c. Commence a whole-system review of post-diagnosis services.

d. Work across Lancashire to develop and agree the QIPP dementia improvement programme.

e. Work collaboratively with East Lancashire Hospitals NHS Trust on the dementia improvement

programme and other local priorities in dementia services.

Commissioning priorities for 2012/13

f. Start to deliver a programme of awareness-raising for the public, and information and advice for

patients and carers, to promote earlier diagnosis and associated life planning and provide appropriate

and timely advice and information at all stages.

g. Review and develop the Memory Assessment Service, and the pathway to diagnosis, including training

health professionals and frontline workers from LSP partner organisations who are in contact with

people who may have undiagnosed dementia.

h. Identify funding for local research into the needs of people with dementia from the BME community

and lower socio-economic groups, and their access to support and services.

i. Act on the recommendations of the whole-system review of post-diagnosis services (see Figure 16).

j. Local implementation of the agreed QIPP dementia improvement programme.

22

11. Where to find out more

Alzheimer’s Society: http://www.alzheimers.org.uk/

Dementia Gateway: http://www.scie.org.uk/publications/dementia/usefulresources.asp

Dementia Information Portal: http://www.dementia.dh.gov.uk/ (requires logon)

12. Key contacts

Blackburn with Darwen

Pauline Walsh, Chair of Dementia Strategy Steering Group, Tel 01254 266620,

pauline.walsh@ageconcernblackburn.co.uk

Lynette Harwood, Head of Mental Health Commissioning, Tel 01254 282060,

lynette.harwood@bwd.nhs.uk

Alzheimer’s Society –

Helen Foster, Area Manager for the North West, Tel 01925 572239

NHS North West –

Simon Rippon, DH Regional Dementia Lead, Tel 0161 625 7457, simon.rippon@northwest.nhs.uk

13. Key Indicators

The Joint Commissioning Framework13 for the National Dementia Strategy, issued in June 2009, introduced a set of metrics which were then under development by NHS South Central. These evolved into a set of Dementia Metrics for every PCT, which can be found on DH’s Dementia Information Portal (http://www.dementia.dh.gov.uk/objectivesAndResources/Implementation_support/, login required).

Before they can be used for meaningful comparison and benchmarking, the Dementia Metrics seem to be in need of some refinement, particularly to the somewhat arbitrary choice of denominators. A few are of questionable relevance (e.g. “General Practitioners per 10,000 population”), and some social care indicators rely on a data source which ceased in 2007/08. The limitations are acknowledged in an accompanying briefing45, which states: “the indicators are not sufficiently robust to enable any differentiation between PCTs and councils based on data, but they can be used to prompt enquiry and raise questions for discussion”.

The Dementia Metrics are not mentioned in Quality Outcomes for People with Dementia (DH 2010)16, which describes itself as a revised implementation plan for the Strategy, so their current status is unclear. Presenting them here would therefore seem to be premature, but it is to be hoped that work is continuing to produce robust outcome measures, which can be used to monitor progress towards the national objectives.

23

14. References

1 Knapp M, Prince M et al (2007). Dementia UK. Alzheimer’s Society, London. Available from

http://alzheimers.org.uk/site/scripts/download_info.php?fileID=2

2 DH (2009). Living well with dementia: A National Dementia Strategy. Available from

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_094058

3 National Audit Office (2007). Improving services and support for people with dementia. Available from http://www.nao.org.uk/publications/0607/dementia_services_and_support.aspx

4 Alzheimer’s Society (2009). Dementia – what every commissioner needs to know. Available from http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=531

5 National Audit Office (2010). Improving dementia services in England – an interim report. Available from http://www.official-documents.gov.uk/document/hc0910/hc00/0082/0082.pdf

6 Alzheimer’s Research Trust (2010). Dementia 2010 – the economic burden of dementia and associated research funding in the United Kingdom. Available from http://www.dementia2010.org/

7 Improving NHS Scotland (2010). Benefits of diagnosing dementia. Available from

http://www.improvingnhsscotland.scot.nhs.uk/programmes/mental-

health/Documents/Dementia%20Toolkit%202010/IST%20-%20Mental%20Health%20-

%20Benefits%20of%20Diagnosing%20Dementia%20-%20July%202010%20-%20App%209.pdf

8 Alzheimer’s Society (2011). Support. Stay. Save. Care and support of people with dementia in their own homes. Available from http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1030

9 DH (2009). Report on the prescribing of antipsychotic drugs to people with dementia. Available from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303

10 House of Commons Public Accounts Committee (2007-08). Public Accounts – Sixth Report : Improving services and support for people with dementia. Available from http://www.publications.parliament.uk/pa/cm200708/cmselect/cmpubacc/228/22802.htm#evidence

11 Royal College of Psychiatrists (2010). National Audit of Dementia (Care in General Hospitals). Available from http://www.rcpsych.ac.uk/clinicalservicestandards/centreforqualityimprovement/nationalauditofdementia.aspx

12 Alzheimer’s Society (2009). Counting the cost – caring for people with dementia on hospital wards. Available from http://alzheimers.org.uk/site/scripts/download_info.php?fileID=787

13 DH (2009). Living well with dementia – Joint Commissioning Framework. Available from http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_100837.pdf

14 All-Party Parliamentary Group on Dementia (2010). A Misspent Opportunity. Available from http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1330

15 NICE (2010). Quality standard for dementia. Available from http://www.nice.org.uk/guidance/qualitystandards/dementia/dementiaqualitystandard.jsp

16 DH (2010). Quality outcomes for people with dementia. Available from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_119827

17 Dementia Action Alliance (2010). National Dementia Declaration. Available from http://www.dementiaaction.org.uk/

18 DH (2011). Living well with dementia – a National Dementia Strategy. Good Practice Compendium – an assets approach. Available from http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_123475.pdf

24

19 Mental Health Foundation (2011). Campaigners welcome decision on Alzheimer’s drugs. Available from http://www.mentalhealth.org.uk/information/news/?EntryId17=84220

20 Leeds University (forthcoming). Ethnic group population trends and projections for UK local areas. Available from http://www.geog.leeds.ac.uk/index.php?id=712 later in 2011.

21 Alzheimer’s Society. Am I at risk of developing dementia? Available from http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=102

22 APHO (2009). Prevalence of dementia – an estimate of future numbers. Available from http://www.apho.org.uk/resource/item.aspx?RID=77391

23 POPPI (2011). Projecting Older People Population Information System. Available from www.poppi.org.uk

24 Sampson SL, Warren JD, Rossor MN (2004). Young onset dementia. Postgrad Med J 2004;80:125–139. Available from http://pmj.bmj.com/content/80/941/125.full.pdf (requires Athens login).

25 Harvey RJ et al (1998). Young Onset Dementia: Epidemiology, clinical symptoms, family burden, support and outcome. Imperial College, London. Available from http://home.kosha.net/~h1415c/report.pdf

26 PSIGE. Special Interest : Young Onset Dementia Page. Available from http://www.psige.org/special_interest_young_onset_dementia.php#YoungOnsetDementia

27 Alzheimer’s Society. Learning disabilities and dementia. Available from http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=103

28 Lancashire County Council et al (2009). Lancashire Multi Agency Outcomes Framework for Dementia. Available from www.lancashire.gov.uk/corporate/web/viewdoc.asp?id=54800

29 CFAS (2005). Incidence of dementia. Available from http://www.cfas.ac.uk/pages/hincidence/index.html

30 NICE (2007). Memory assessment service for the early identification and care of people with dementia. Available from http://www.nice.org.uk/usingguidance/commissioningguides/memoryassessmentservice/

31 NICE (2010). NICE indicator guidance for QOF Indicator area: Dementia. Available from http://www.nice.org.uk/nicemedia/live/13076/50054/50054.pdf

32 Parliamentary Office of Science and Technology (2010). Postnote Number 349 – Diagnosing Dementia. Available from http://www.parliament.uk/documents/post/postpn349.pdf

33 University of Worcester – Association for Dementia Studies. Enriched Opportunities Programme. Available from http://ihsc.worc.ac.uk/dementia/enriched.html

34 Alzheimer’s Society (2010). Factsheet 473 – Direct Payments. Available from http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=141

35 Alzheimer’s Society (2009). Public awareness of dementia: what every commissioner needs to know. Available from http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=778

36 Bradford District Care Trust (Sept 2007). Connections. Available from http://www.bdct.nhs.uk/communications/news/connections-pdfs/con-sept-07.pdf

37 SCIE (2011). Research briefing 35: Black and minority ethnic people with dementia and their access to

support and services. Available from http://www.scie.org.uk/publications/briefings/briefing35/index.asp 38 Age UK (Jan 2011). Living life with dementia : Local Age UK and Age Concern contributions to quality outcomes for people living with dementia and their carers. Available from http://www.ageuk.org.uk/documents/en-gb/

for-professionals/care/living%20life%20with%20dementia_pro.pdf 39 East Lancashire Memory Assessment Service (2009). Operational Policy (Draft 3). Available from http://www.sharps.eastlancs.nhs.uk/mentalhealth/documentation/?asset=37210&assetesctl337843=37502

40 Care Quality Commission (2010). Directory of care homes and care services. Available from http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp

25

41 Care Quality Commission (2010). Market profile, quality of provision, and commissioning of adult social care services. Available from http://www.cqc.org.uk/publications.cfm?fde_id=16476

42 HES online. England figures available from http://www.hesonline.nhs.uk/Ease/servlet/ContentServer?siteID=1937&categoryID=202 43 NHS Blackburn with Darwen Medicines Management Team (Feb 2011). Report of baseline audit of antipsychotic prescribing in dementia patients in primary care. 44 Institute of Public Care (2010). Anticipating Future Needs Toolkit. Available from http://www.csed.dh.gov.uk/dfAndCapacityPlanning/anticipatingFutureNeeds/

45 DH (2010). Dementia Metrics Briefing – March 2010. Available from http://www.dementia.dh.gov.uk/objectivesAndResources/Implementation_support/ (login required).

26

Appendix

Figure 19 - National Dementia Strategy - the 17 key Objectives

Source: Healthcare for London*, adapted from National Dementia Strategy2

* Healthcare for London (2009). Dementia Needs Assessment. Available from http://www.healthcareforlondon.nhs.uk/assets/Mental-health/01-Dementia-Needsassessment-v2.0.pdf