dementia centres of excellence: projecting...
TRANSCRIPT
1
Dementia Centres of Excellence: Projecting Demand
Dementia is not a consequence of old age, but its prevalence increases with ageing. In an
ageing population, therefore, more of us will experience dementia, either personally or
through the experience of a spouse, parent, grandparent or other relative or friend. In the
absence of a cure or effective preventative action, dementia will increasingly become an
issue for us individually and for society as a whole.
There are now approximately 800,000 people with dementia in the UK and there are
estimated to be around 670,000 family and friends acting as primary carers. The current
financial cost of dementia is £23 billion a year to the NHS, local authorities and families and
the cost will grow to £27 billion by 2018. Yet this significant spend is often not being
deployed effectively and is not necessarily delivering good outcomes for people with
dementia and their carers.
Within Staffordshire only 42% of people with dementia1 have a formal diagnosis, the same
as the national rate. Often, diagnosis comes too late – during a crisis or beyond the point
where people can plan for the future and make informed choices about how they would like
to be cared for2.
Demand for dementia care in Staffordshire
The latest estimates show that the population of Staffordshire is ageing. Between 2001 and
2011 the number of residents above the age of 65 increased by 25% (representing almost
31,000 additional people) and the number of residents above the age of 85 has increased by
38% (an increase of over 5,000). Conversely, there has been a 3% reduction in the number
of residents below the age of 20 years old (see figure 1 below).
Figure 1: Change in population by age group between 2001 and 2011
1 LA Dementia Prevalence Calculator
2 DoH : Prime ministers challenge on Dementia March 2012
3%
-10%
9%
-9%
4%
30%
17%
38%
0-4 5-14 15-29 30-44 45-59 60-74 75-84 85+
Appendix A
2
Dementia can happen at any age but its incidence rises rapidly with age, for example
nationally 1 in 100 people aged between 65 and 69 have been diagnosed with dementia,
rising to 1 in 6 people aged 80 and above3. Therefore the ageing population in Staffordshire
means demand for dementia services will increase.
The projections for the prevalence of dementia are taken from POPPI and PANSI, both
widely used as sources of data for projecting prevalence of disability. Figure 2 illustrates
how the total number of people over 65 with dementia is projected to rise from around
11,000 in 2012 to 20,500 in 2030, an increase of 86%. Looking retrospectively, the number
of people with dementia increased by 13% in Staffordshire, from 9,5004 in 2009 to 11,000 in
2012. Projecting forward we can see that by the year 2030 the number of people diagnosed
will almost double to 20,500.
Figure 2: Persons within Staffordshire with Dementia
Data Source : Quality and Outcomes Framework (QOF) England and Projecting Older People Population
Information (POPPI) data.
If we look in further detail within Staffordshire (figure 3 ), we can see there are differences
in the current numbers of people diagnosed and undiagnosed with dementia by district.
Stafford and Newcastle have the highest numbers of people diagnosed, whereas Tamworth
and Lichfield have the lowest. With the challenge from the Prime Minister to increase
diagnosis rates5 more people will be directed towards formal care.
3 Dementia UK : Full Report 2007
4 Health and Social Care Information Centre - QMAS database - Quality and Outcomes Framework (QOF) England
5 The Prime Ministers challenge on Dementia (2012)
Year 2009 9,500
Year 2012
11,000
Year 2020
14,500
Year 2030
20,500
3
Figure 3: Number of patients by district diagnosed with Dementia on GP practice registers
Capacity of dementia care in Staffordshire
The number of dementia care beds within Staffordshire since 2004 has remained constant.
In 2004 there were 5,939 registered beds in 150 establishments, in February 2013 there are
187 Care Quality Commission registered establishments providing 5,948 beds, of which
around 3,600 provide nursing care6, and over 400 beds are in dual registered
establishments. A dual registered establishment is a service that provides both nursing and
non-nursing care. Therefore in these establishments it is less likely a service user will need
to move to a different establishment when or if they have a change of health needs.
There are 743 people in residential care in Staffordshire7, with almost the same number of
people again (734 people) having some form of community based care for dementia.
It is estimated that over one third (36%) of people with dementia live in some form of
residential care8, with the remainder living in the community. Current capacity within
Staffordshire may be adequate in terms of number of beds but public consultation indicates
that current capacity may not meet the needs in terms of quality and cost. Also taking into
account a growing and ageing population, we can forecast that by 2025 the demand for
dementia care will exceed supply as shown in figure 5 overleaf (assuming capacity remains
the same).
6 CQC database at 11th February 2013
7 CISS database
8 Dementia UK : Full Report 2007
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
0
200
400
600
800
1000
1200
1400
1600
1800
Dia
gn
iso
s ra
te
Nu
mb
er
of
De
mn
tia
ca
ses
(Dia
gn
ose
d a
nd
un
dia
gn
ose
d)
Estimated
number of
persons
undiagnosed
Number on
GP practice
dementia
register
Diagnosis
Rate %
4
Figure 4: Projection of people who require residential care and capacity in Staffordshire
Data Source : Dementia Prevalence Calculator ( Dementia Partnerships )
The Prime Minister’s challenge (March 2012), building on the National Dementia Strategy,
commits to improving dementia diagnosis rates through regular checks of over 65s: ‘from
April 2013, there will be a quantified ambition for improved diagnosis rates across the
country, underpinned by robust and affordable local plans. We will ensure GPs and other
health professionals make patients aged 65 and older aware of memory clinics and refer
those in need of assessment.’ Therefore, coupled with an ageing population9, diagnosis and
therefore demand on care will only increase over time,
Dementia is very strongly linked to age, so the ageing population will lead to increasing
numbers of people suffering from the disease. Figure 5 overleaf illustrates the total increase
between 2012 and 2030 by age group. The increase in the number of people with dementia
aged 90 and over is clear from the graph, with a large gap between the 2012 and 2030
figures. The numbers increase from around 4,200 in 2009 to 8,000 in 2025 (around 90%), a
reflection of the fact that the number of people aged 85 and over will increase dramatically.
Around 240 people are predicted to have early onset dementia by the year 2030 across the
county, which is similar to present numbers, thus there will be a limited additional impact in
the future.
9 DoH : Prime ministers challenge on Dementia March 2012
3000
4000
5000
6000
7000
8000
2012 2015 2020 2025 2030
Year
Require Care Total Capacity
capacity
gap
5
Figure 5: Projected numbers of people by age with Dementia in Staffordshire
We can see that in figure 6 overleaf, by the year 2020 demand will exceed the current
supply of residential beds in Stafford and Tamworth. In addition, Cannock Chase and East
Staffordshire will reach 90% capacity or above.
Figure 6 also shows the majority of specialist dementia provision is concentrated in the
more costly nursing care sector. This clearly shows that people who develop dementia in
later life are likely to have to move to have their care needs met. For people with dementia,
moving can be particularly disruptive and detrimental to their health. This is less likely for
those service users in South Staffordshire, as a third of its beds are within a dual residential
establishments.
0 1,000 2,000 3,000 4,000 5,000 6,000
65-69
70-74
75-79
80-84
85-89
90 and over
2012 2020 2030
6
Figure 6: Projected numbers of people with Dementia in Staffordshire by 2020
* Number based on POPPI estimates and assuming 36% (Dementia UK : Full Report 2007) of people with dementia require
some form of residential care
0
100
200
300
400
500
600
700
800
900
1000
0
100
200
300
400
500
600
700
800
900
1000
Nu
mb
er
of
De
mn
tia
ca
ses
(Dia
gn
ose
d a
nd
un
dia
gn
ose
d)
Care home
service without
nursing
Care home
service with
nursing
Dual Registered
*Require
residential care
(2020)
7
Figure 7 below shows by the year 2030 demand will exceed supply across all districts on
average by 30%, Tamworth will need more than double the number of beds that are
currently available and 60% more will be required in Stafford district to meet the demand.
Figure 7: Projected numbers of people with Dementia in Staffordshire by 2030
* Number based on POPPI estimates and assuming 36% (Dementia UK : Full Report 2007) of people with dementia require
some form of residential care
Figure 8 overleaf shows the locations and capacity of residential care within Staffordshire of
both nursing and non-nursing care. From the map we can see that care is centred on the
main population areas across the county. The majority of the larger establishments that
provide nursing care are within Newcastle, Cannock and Lichfield districts, although there is
no provision for nursing care around Uttoxeter. Appendix 2 highlights by districts and ward
level where current provision is high or low.
0
200
400
600
800
1000
1200
0
200
400
600
800
1000
1200
Nu
mb
er
of
De
mn
tia
ca
ses
(Dia
gn
ose
d a
nd
un
dia
gn
ose
d)
Care home
service without
nursing
Care home
service with
nursing
Dual
Registered
*Require
residential care
(2030)
8
Figure 8: Nursing and residential care beds for clients with Dementia
Crown Copyright and database rights Ordnance Survey 100019422
Use of this data is subject to the terms and conditions shown at www.staffordshire.go.uk/maps
9
Self-funders
It is estimated that in England 45% of people are self-funding their care. Providers are the
only ones who really know who self-funds and there is no central repository for this
information10
. Another issue to consider is that self-funders’ assets may eventually drop
below the £23,250 threshold and support would then have to be paid by Staffordshire
County Council. Figure 9 below gives an indication of the time it takes for someone to reach
the threshold.
Figure 9: Duration of self-funding
Assets (£) Years to reach threshold of £23,250
230,000 14
188,000 10
30,000 1
Pressure on NHS
People with dementia over 65 years of age are currently using up to one quarter of hospital
beds at any one time and stay far longer in hospital than other people who go in for the
same procedure. The longer people with dementia are 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 used11
.Therefore a high
proportion of such admissions are preventable and primary care, community services and
social care have a key role to play.
Public consultation in Staffordshire
Gaining insight and listening to people’s experiences will also help our services to be more
cost effective as we can effectively target our resources and get it right first time. In turn
this leads to people being more satisfied with their services and lower costs as resources are
better targeted according to needs.
Consultation carried out by Staffordshire County Council in October 2012 asked people’s
views about future services for Dementia Centres of Excellence12
.
33 out of 40 respondents cited the staff as what they like most about the service, with
comments generally relating to the friendly, helpful and caring attitude and the quality of
the care they provide ensuring dignity and respect.
Also when asked how services can be improved for dementia care, responses included:
• Better building design/ facilities e.g. en-suite rooms/ coffee shop etc
• Nursing care/ CPN/ Health Services on site
10
Putting People First Consortium - People who pay for care: quantitative and qualitative analysis of self-
funders in the social care market Jan 2011 11
Lakey (2009). Counting the Costs. Caring for people with Dementia on hospital wards. Alzheimer’s Society 12
Staffordshire County Council -Centres of Excellence for Dementia Care and Ageing Well (December 2012)
10
• Continuity of staff / increased staffing levels
• More activities/ stimulation
• More information regarding services available
In Summer 2012, Staffordshire County Council published the ‘Green Paper for a Revolution
in Care Quality’. The Green Paper sets out the county council’s future vision for a revolution
in care quality to benefit the people of Staffordshire and makes recommendations to bring
about a step change in care quality. Although the focus of the consultation was not
specifically dementia care, there are findings from this consultation that are relevant.
Respondents to the Green Paper consultation identified three essential components in the
delivery of a high quality care and support service, namely:
• Being treated fairly and with dignity
• The behaviour and attitude of staff
• The knowledge and skills of staff
43% of respondents do feel that a quality care service is currently being provided in
Staffordshire and a further 39% feel that this is partially happening, which suggests there is
room for improvement. An additional 18% did not feel that quality care standards are
currently being met. Those who have actual experience of care and support services are
more likely to feel that a quality care service is currently being provided than those who do
not have direct experience of using care and support services.
Figure 10: Themed comments on social care and support services
Data Source : Quality green Paper, Consultation Report, October 2012
The Green Paper also defined a strategy to improve quality of services in Staffordshire.
Several areas were identified, including linking senior leadership exclusively to quality,
combined with quality planning at all levels, which will provide the right environment to
support staff to focus on delivering high quality improved outcomes for all. Also the need to
identify areas of training that will support care homes, to improve quality standards and
better meet the needs of residents. These also need to be combined with a small number of
core valid indicators which contribute to the national quality agenda, and local specific
indicators which will drive quality improvement in practice and service development locally.
11
The findings from the People’s Panel during spring 201213
shows over half (52%) of
respondents were aware of dementia care. 22% of the respondents were carers or knew
someone who was a carer but 62% of these did not feel that they currently get the support
that they need. More help to allow carers to “take a break” as well as “advice” and
“guidance” at the right time would be appreciated.
General Concerns of the Peoples Panel were :
• The NHS seem “reluctant to diagnose Dementia”
• “Standards (in) the quality of care are inconsistent”
• There is a need for “a central source of information” to avoid “inconsistent
information being given out”
Approximately 80 people attended a stakeholder workshop in September 2012 organised by
Staffordshire Link. This workshop identified issues in the current dementia care pathway.
The key messages from the event included:
• Need for more resources
• Need for services to be community based
• Need for more support for carers
• Need for better staff training and for staff to be made more aware of Dementia and
the impact it has
• Need to plan for the future and growing demand
• Need for services to be more flexible and person centred
• Need joined up thinking and strong communication between organisations
Creating Dementia-friendly communities that understand how to help
The health and care system has a vital role to play in improving support for people with
dementia. Lack of awareness among the public and poor understanding in communities
has a major impact on the experience of people with dementia.
People living with dementia want to remain independent for as long as possible, and they
want to have choice and control over their lives through all stages of their dementia. With
an early diagnosis and the right support they can achieve this.
However this is not the experience of the vast majority of people living with dementia.
Not only do they frequently have to battle for diagnosis and support, but everyday things
we all take for granted – getting to the shops, spending time with friends and family are
made difficult because of the limited understanding of dementia in their communities.
The common misunderstandings about dementia – that it’s an inevitable part of ageing
and that nothing can be done to improve people’s lives – prevents our communities and
society from becoming more Dementia-friendly and meeting the needs of people with
13
Peoples Panel Spring 2012
12
dementia and their families. As a society, we must make sure that people with dementia,
their carers and families can be active citizens with the potential to live well with dementia
at every stage of the condition14
.
Building more dementia-friendly communities will take time. The Alzheimer’s Society are
taking the lead, working with members of the Dementia Action Alliance to create a formal
Dementia-friendly recognition process that will make villages, towns and cities accountable
to people with dementia and their carers through local Dementia Action Alliances. They will
identify what areas need to do to be recognised as dementia-friendly and only those areas
that meet their criteria will be granted dementia-friendly community status.
Conclusion
This report has considered issues surrounding dementia care, relating to current and
projected demand, capacity and supply and public perceptions. With early and increasing
diagnosis rates and an ageing population, by 2020 demand will exceed supply in some
districts and by 2030 demand will exceed supply by 30% across all of Staffordshire.
14
DoH : Prime ministers challenge on Dementia March 2012
13
Appendix 1
Service User Stories
Throughout the consultation process, Engaging Communities Staffordshire spoke to a large
number of service users with stories to tell. The below presents a small selection of these
stories to give a flavour of the issues and experiences that people have in Staffordshire.
“My husband suffers with Dementia and also has some challenging behaviour issues. I have
known for some time that he needed to go into a care home to be cared for properly as his
condition was becoming very difficult to manage. Having admitted him to two care homes
and later removing him, I settled on one that offered a good staff ratio to client and a home
that appeared to specialise in Dementia and treat their residents well. The staff appeared
well-trained, tidy and professional. They seem well equipped to treat him with dignity and
respect and, given all his problems, to treat him as a human being. After two care homes
misdiagnosing him I feel calm and in control for the first time in two years! I can begin to
adapt to my new life safe in the knowledge that Graham is happy.”
A family member of someone who is receiving care and support services living in
Staffordshire
“My mother-in-law suffers with Dementia and she is getting progressively worse.
She is becoming an increasing worry to both me and my husband and we have become
anxious about the situation just simply because we don’t know what to do or who to turn
to. We need information, advice and guidance from a reliable source and preferably one
organisation. We want to know what the next steps are likely to be, where we can get
access to funding if required, who can help us with a care package and my mother-in-law’s
assessment. She’s coping at the moment and that seems to suffice for social services. How
bad do things have to get before someone is able to intervene?”
A family member of someone who is receiving care and support services living in
Staffordshire
14
Appendix 2
Care home beds per 1,000 population aged 65+ by district
Crown Copyright and database rights Ordnance Survey 100019422
Use of this data is subject to the terms and conditions shown at www.staffordshire.go.uk/maps
15
Care home beds per 1,000 population aged 65+ by ward
Crown Copyright and database rights Ordnance Survey 100019422
Use of this data is subject to the terms and conditions shown at www.staffordshire.go.uk/maps