Appendix 2
New Directions
Joint Learning Difficulty Service
Project Report
Older people with learning difficulties
Report by: Cath Rotherham
Healthcare Facilitator (Adults: Learning Difficulties) February 2010
1. Purpose of Report
This report provides baseline information related to older people with learning difficulties in Salford.
This includes:
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People 65 years and above.
People with Down’s Syndrome who are 30 years and above.
Adults with Down’s syndrome have been included owing to the high incidence of early onset
dementia, especially Alzheimer’s disease. The aging process appears prematurely, and from middle
age onwards people with Down’s syndrome can present as a medically very vulnerable group.
(Dementia is a term used to describe a range of conditions caused by physical and chemical
changes to the brain, which lead to a decline in memory, communication, reasoning and the ability to
carry out routine tasks of living)
This baseline information will be used to inform the Commissioning Strategy.
2. Introduction
2.1 Vision / Aims for Older Peoples Services
People are living longer than ever before, and this includes people with learning difficulties. In 2007,
for the first time in the UK, there were more people aged 65 and over than there were children under
16 years. Within 20 years half of the adult UK population will be aged over 50.
One in five people living in Salford are 60 years old or more (census 2001) and 10.3% of the adults
known to Salford Social Services as having a learning difficulty are 65 years or older. Planning for
older adults with learning difficulties has been ongoing for a number of years; this report pulls key
information together and makes recommendations for the next steps and future service
developments.
The stated aim of the National Health Service (NHS) is to ‘add years to life’ and ‘life to years’. This
demonstrates the commitment the NHS has to supporting people to enjoy life in their older years.
This is also a key goal for Salford’s health and social care services. The vision for NHS Salford,
described in its Strategic Plan (2009-2014) is: ‘The people of Salford will live longer, healthier lives
supported by a world class health system’ and in achieving this it recognises that it will need to
provide additional support to vulnerable groups (Appendix 1).
2.2 Salford’s Plans for Older People (NHS Salford and Salford City Council)
In order to meet this vision Salford City Council and NHS Salford have a number of strategies,
policies and initiatives in place to address the needs of older people. Attention has been given to
these approaches to ensure that older people with learning difficulties also benefit. Valuing People
Now (2009), which is the government’s strategy for people with learning disabilities, clearly points out
that all people with a learning disability are ‘people first’ with the right to lead their lives like any
others, with the same opportunities and responsibilities, and to be treated with the same dignity and
respect. It reminds us that they and their families and carers are entitled to the same aspirations and
life chances as other citizens. The four guiding principles set out in Valuing people relate to Rights,
Independent Living, Control and Inclusion. In relation to health the overall objective is that ‘All people
with learning disabilities get the healthcare and support they need to live healthy lives’
Salford’s Joint Strategic Needs Assessment (2008-2013)
Salford’s Joint Strategic Needs Assessment (JSNA: 2008-2013) has a significant focus on
addressing the needs of older people as the majority of social care is provided to this group. It aims
to support older people to stay in their own homes and wants to encourage self-care where
appropriate. The JSNA identifies falls, excessive winter deaths (mainly due to respiratory and
circulatory diseases), long-term conditions and oral health disease as key priority areas. The JSNA
also looks at the more vulnerable ‘older people’ such as those who are; ‘very old’, living alone, living
with limiting long term illness or long term conditions, with dementia or depression, with drug or
alcohol problems, with caring responsibilities, with physical disabilities, with learning difficulties etc.
The table below, taken from the JSNA, shows the present and target activity for social care provision
for older people.
Social care provision for Older People in Salford, 2008-2025
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Salford’s Strategy for Older People: Growing Older in Salford (2009)
Salford’s strategy for older people: Growing Older in Salford: A refreshed strategy for well-being
(March 2009) refreshes the Strategy for Wellbeing ‘Growing Older in Salford’ which was published in
2006. It looks at the population of older people and identifies priorities for future actions by both
commissioners and providers. The strategy keeps at its core the need for partnership work and
engagement with older people to ensure that their views help shape future services. It also promotes
active working at neighbourhood level and supports the ‘Inverted Triangle of Care’ model - providing
wide-reaching services to older citizens across Salford by extending universal services that promote
health and well-being.
The priority areas in the strategy relate to; feeling safe and secure, combating ageism & enabling
people to be involved in the life of the community, transport, being healthy & active, access to
information, health/social care & housing, having an adequate income, increasing the involvement of
older people in policy development and service design and ensuring that services are sensitive to the
needs of older people.
The strategy gives lots of statistical information about older people, much of which has been included
in this report. In respect of dementia the report identifies that the incidence of dementia is projected
to increase by 16.6% for the 65+ population and by 24% for the over 85 population. That will be 2882
people aged 65+ and 1330 individuals aged over 85. The strategy also reports that dementia makes
a significant contribution to deaths - it is estimated that 246 people die in Salford every year due to
causes attributable to dementia, roughly 10% of all deaths.
The strategy also points out that Salford attracted over £1million from the Department of Health to
support the development of Extra Care Housing and services. The Extra Care Housing Fund
provides money for building or changing housing to help older people with higher support needs to
live independently. A number of older people with learning difficulties have benefited from the Extra
Care Housing Fund.
An action plan for the period 2009 to 2012 has been developed to implement the recommendations
in the strategy, and will be monitored and reviewed by members of the Wellbeing / LinkAge Plus
Development Board for Older People.
Salford’s Strategic Partnership (Partners IN Salford)
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Partners IN Salford brings together people from the city's public, private, community, voluntary and
faith sectors. These people work closely together to ensure that all of Salford's citizens have an equal
chance to thrive. The vision for Salford is published in Making the Vision Real, our community plan.
This plan, laid out under seven themes for the future of the city, sets out the vision for the city in
2016:
"In 2016, Salford will be a beautiful and welcoming city, driven by energetic and engaged
communities of highly skilled, healthy and motivated citizens, who have built a diverse and
prosperous culture and economy which encourages and recognises the contribution of everyone, for
everyone"
Much of what will be done to achieve this vision is written in the Salford Agreement, a three-year
agreement between the partnership and the Government in which Salford partners state how life will
be made better for the people of Salford.
Members of Partners IN Salford have made a shared commitment to achieve their vision and the
targets in the Salford Agreement.
2.3 National / Governments Plans for Older People
In planning to meet the health and social care needs of older people with learning difficulties it is
important that we pay attention to the Government initiatives that are being introduced for older
people so that we do not develop services that duplicate, oppose or contradict. It is also important to
focus our attention, where possible, on making mainstream services inclusive and accessible rather
than develop ‘specialist services’. The main drivers for older people from the Government are
described below.
Building a Society for all Ages (July 2009) Government’s strategy for older people
The Government’s plans for older people, taken from their latest strategy Building a Society for all
Ages (July 2009) includes initiatives such as:
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New interactive ‘one stop shop’ - for helping people planning ahead.
Active at 60 package – to provide people approaching their 60th birthday with information
about their entitlements and opportunities, such as the free swimming initiative launched in
2009.
All-in-one smart cards – to enable access to a range of local activities including leisure
services. Focus on developing opportunities for people over 50 in sport
Digital inclusion projects - targeted at giving people in sheltered housing access to new
technology to help them stay in touch with friends and family.
Review of the default retirement age
Innovation and Growth Team – promote age inclusive design and services.
Health Prevention Package – preventative services for conditions which often affect people
in later life, including foot care, falls prevention, continence care, depression and arthritis.
Good Place to Grow Old Programme – promote the importance of aging issues at a local
level and to provide funding to test new and innovative approaches for delivering services
for older people.
New UK Advisory Service on Aging – provide advice to ministers across Government on
improving wellbeing and independence in later life.
Driving for Life Programme – or support to people to make the most of the public transport
network. More accessible transport and blue badges for people with ‘severe mental
disabilities’
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Equality Bill – will ban unjustifiable age discrimination from April 2012.
Vascular Risk Assessment & Management Programme - in 2009/10 the NHS will offer this
health check (to people aged between 40 and 70 years) once every 5 years to assess their
risk of heart disease, kidney disease and diabetes, followed by individually tailored advice
to support them in managing or reducing their risk.
First Stop – free independent information and advice service for people in later life about
housing options, care, finance and rights. It will include a website and telephone helpline
and it is to be provided by the third sector.
Assisted Living Innovation Platform together with the Technology Strategy Board and
others to develop the technology to help people with Long Term Conditions live more
independently.
Lifetime Home Standards - through ‘Lifetime Homes, Lifetime Neighbourhoods’ set out a
vision for the design of homes to meet the needs of people throughout their lives. To
ensure that by 2011 all public sector housing will be built in accordance with Lifetime Home
Standards. This includes, for example, wheelchair access, slopes to doors and lower
positioned switches.
National Care Service (Care & Support Green Paper)
The Government is proposing a new ‘National Care Service’ (Care & Support Green Paper) which
will have implications for the way care is delivered to older people. It proposes a mixture of services
that will help disabled and older people take care of themselves, live full, active and healthy lives, join
in with other people and enjoy the good things that come from independent living.
Personalisation and Choice
The personalisation and Choice agendas are transforming how adult social care is delivered. It is
primarily about giving people choice and control over the assistance and support they need to live
their daily lives. People are no longer ‘passive recipients of services designed and delivered by
someone else’. Personalisation reinforces the idea that the individual is best placed to know that they
need and how those needs could best be met.
On an individual level, personalisation means that all support should be tailored to each person's
needs. It is important that carers are recognised and supported in their role so that they have the
opportunity to have a life beyond their caring role.
On a broad level, personalisation means finding new ways of working with the community to develop
new opportunities. It means a total system response involving all areas of the council and community
to ensure that universal services are accessible to everyone.
There are many terms associated with personalisation, such as; self-directed support, individual
budgets, personal budgets and direct payments.
3. Key National / Local Documents
National
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Putting People First: Personal budgets for older people – making it happen (2010)
Valuing People Now: a new three-year strategy for people with learning disabilities.(DH 2009)
Building a Society for All Ages: HM Government (July 2009)
Living well with dementia: A National Dementia Strategy (DH 2009)
The Social Inclusion Programme (2009)
Carers at the heart of 21st century families and communities (2008)
Carers Strategy (2008)
Lifetime Homes, Lifetime Neighbourhoods (2008)
Don’t Stop Me Now: Audit Commission (2008)
Care, Support, Independence (2008)
Independence and Opportunity: Our strategy for supporting people (2007)
Opportunity Age: Meeting the challenges of aging in the 21st Century (2005)
Independence, Wellbeing and Choice: a vision for the future of adult social care (2005)
Securing Better Mental Health for Older Adults (DH 2005)
Everybody’s Business – Integrating Mental Health Services for Older Adults (November 2005)
All Our Tomorrows (2003)
National Service Framework for Older People (2001)
Local
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Joint Commissioning Strategy for Integrated Services for Older People with Mental Health
Needs and their Carers in Salford (2008–2013).
Salford’s Joint Strategic Needs Assessment (2008-2013)
Mental Health Services for Older People in Salford: Strategic Review & Strategic Framework
(2005-2008)
Growing Older in Salford: A refreshed strategy for well-being (March 2009)
Growing Older in Salford: A strategy for wellbeing (2005/06)
Salford Carers Strategy
Everybody’s Responsibility: Strategy for Improving Supportive and Palliative Care Services for
Adults in Salford (2007–2012) Salford PCT.
Learning Difficulty Service: Dementia Diagnosis Pathway and Dementia Screening Project.
4. Current provision for Older People in Salford
The Partnership Board for Older People (established in 2004) brought together commissioners for
services for people growing older from the PCT, the Community, Health and Social Care Directorate
of the City Council and the Councils Strategic Housing Division, in addition to representatives of older
citizens and of the Voluntary sector. The Board is central to joint commissioning for older people and
seeks to ensure that investments in services are jointly agreed and meet the needs of older people in
Salford. The post of ‘Head of Joint Commissioning for Older People’ was established in 2006 and is
based at NHS Salford.
The following list is not exhaustive but details a number of services / initiatives that are in place for
older people in Salford. Many of these are used by people with learning difficulties, but the challenge
remains to both promote these services to older people with learning difficulties (and those who
support them) and address any difficulties with accessibility.
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Integrated Community Mental Health Teams for Older People x 2
Memory Assessment & Treatment Service
Humphrey Booth Resource Centre (dementia care) – opened November 2009.
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Day Care (at locations across the city) – providing ongoing monitoring and support to older
people with/without mental health problems.
White Meadows Day Care – providing day care for older people with mental health needs in a
LA setting supported by specialist mental health practitioners providing assessment and
ongoing monitoring.
Woodlands Day Hospital – providing specialist mental health assessment for older people
with dementia.
Dementia in-reach Team – who provide specialist management, assessment and review of
older people with moderate to severe dementia in non-NHS day care provision.
Joint Health & Social Care Teams – bringing together District Nursing and Social Care
Services – piloted 2005 and extended citywide 2007/08.
Community Matrons introduced to help people to manage Long Term Conditions eg
Parkinsons’ Disease, Stroke, Diabetes, which tend to be more prevalent amongst the older
population.
CMHTs Older People Mental Health – provide care and treatment to approximately 700
service users.
Creatuve START 50+ arts project – this service promotes good mental health, combats
isolation and helps people exercise control. Initially funded by LinkAge Plus. It is run by
START in Salford and has brought a range of art activities to older people throughout the city.
Art tutors lead groups for a 12 month period and then groups are supported to become userled.
A local website (WWWaskSID.info) with information about services and activities of interest to
older people.
A free printed ‘Short guide to services and activities for older people in Salford’
The ‘one stop shop referral network’ – LinkAge Plus funding was used to enhance and
develop an existing customer contact centre to provide a more ‘joined up’ service for older
people. The resulting system, called ‘Citizen’, can refer people onto other appropriate age
related services (with their consent) such as; flu jabs, The Pension Service, Doorstop Crime
Prevention, Warm Front, Fire Service/prevention.
Salford’s Housing Choice Service – helps people make sustainable housing choices. In
addition to helping people find new accommodation and helping with the moving process it
links people to other appropriate service providers such as; Salford Home Improvement
Agency, the Affordable Warmth team, burglary and crime reduction teams, occupational
therapy team, the housing market renewal teams, Housing Dept staff, Community Health and
Social Care Directorate, citywide Handypersons’ Service.
Healthy Hips & Hearts Service – supported by LinkAge Plus funding – exercise sessions but
which also provide a valuable opportunity for older people to meet and socialise. This service
also runs reminiscence sessions, tai chi, chair based exercise, belly dancing, a choir and
holds regular tea dances.
Assisted Exercise Equipment – designed for people with restricted mobility (eg strokes) has
been installed at centres in Eccles, Pendleton and Ordsall and is accessible with GP
approval.
Disabled Facilities Grant – enables changes to be made to people’s homes to enable them to
be more independent and/or remain at home.
The Supporting People Programme – funding to enable vulnerable people to live more
independently.
Extra Care Housing & Services – funding to provide (build or adapt) housing to help with
higher support needs to live independently.
Age Concern - have been commissioned to provide a ‘buddy service’ to older people with
dementia and an ‘out-reach’ service to their carers. This is funded by the Carers Grant.
Dementia Diagnosis Pathway - led by LD Psychology / Psychiatry Services at New Directions
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(Joint Learning Difficulty Service) to look at assessment / support for people with suspected
and/or diagnosed dementia.
Dementia Screening Project – led by Psychology / Psychiatry Services at New Directions,
providing screening to adults with Down’s syndrome who are 30 years or above. This will then
provide a baseline assessment for future comparison purposes.
Health Facilitators and Health Action Plans – a significant number of older people with
learning difficulties now have identified Health Facilitators and personal Health Action Plans.
This support enables them to manage their health more effectively.
Local Enhanced Service (LES) Learning Disability Health Checks – this has resulted in the
GP Practices in Salford providing health checks for the patients on their Learning Disability
Registers. Both Older people with learning difficulties and people with Down’s syndrome have
benefited from these health checks.
Appendix 2 provides details of existing services and local activities; it is taken from Salford’s strategy
Growing Older in Salford: A refreshed strategy for well-being (March 2009)
5. General information on older people with learning difficulties
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The life expectancy of people with Learning Disabilities has significantly improved over the
years from as little as an estimated 18½ years in the 1930’s to 59 years in the 1970’s to 66
years in the 1990’s (Braddock 1999)
The life expectancy of people with a more severe learning disability remains reduced
compared to the general population.
There are approximately 1.2 million people with mild or moderate learning disability, 265 000
(21%) of these are older people over the age of 60 (Valuing People 2001)
There are an estimated 210,000 people living in England and Wales who have a severe or
profound learning disability: only 25 000 (12%) of these are older people aged over 60 years
(Valuing People 2001)
Professor Eric Emerson, professor of disability and health research at Lancaster University
has predicted a 28% increase in the number of people with a Learning Disability between
2001 and 2011 and a 48% rise by 2021.
Given that the life expectancy of those with a mild Learning Disability is now approaching that
of the general population, it has been predicted that the proportion of people with Learning
Disabilities over 65 years of age will have doubled by 2020 (Janicki & Dalton, 2000)
People with Learning Disabilities have a higher risk of developing dementia compared to the
general population, with a significantly increased risk for people with Down’s syndrome and at
a much earlier age.
The GOLD programme (Growing Older with LD) in their Gold Report Recommendations
stated: The foundation for people with LD calls for older people to have the right to be
supported to have: Person Centred Plans; Develop and maintain new friendships; Maintain
links with their families when they have left home; Have access to independent advocacy; Be
cared for, in terminal illness, as far as possible in a familiar environment, in a way that
respects their wishes; Have their physical and mental health needs met - they should have
access to regular health check-ups.
6. General information on people with Downs syndrome
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Down’s syndrome is the most frequent known cause of learning disability
Down’s syndrome has been estimated to account for 15-20% of the Learning Disability
population
The incidence and prevalence of Down’s syndrome is not decreasing.
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The life expectancy for people with Down’s syndrome has increased significantly, from 9
years in 1929 to the average now being over 50 years with many people living into their 70s.
People with Down’s syndrome have an earlier age-related risk of developing dementia. The
most common cause of dementia for this group being Alzheimer’s disease.
A number of studies have reported behavioural changes, rather than functional memory
decline, are the early signs of developing dementia for people with Down’s syndrome.
A small number of young people with Down’s syndrome seem to present with a decline in
their teens or early twenties, often with no clear aetiology.
The British Psychological Society advises to assess every adult with Down’s syndrome at the
age of 30 to establish a baseline against which to compare future suspected changes in
functioning
Diagnosing dementia is often ‘provisional’ as a true picture may only emerge after a length of
time. This should not prevent implementing the necessary care plans to support the person
with their situation as it currently presents.
The occurrence of seizures (epilepsy) for the first time is very common in people with Down’s
syndrome who have developed dementia.
There is evidence that people with Down’s syndrome may be more prone to depression that
those in the general population. Depression in later life, if severe, can mimic the features of
dementia and it is sometimes referred to as ‘pseudo-dementia’.
7. Details on Salford’s population of older people with LD (65yrs+)
Information obtained from Salford City Council
There are 958 adults with learning difficulties registered on care-first (local authority register) and of
these 103 adults are age 65 or above (10.3%). The age breakdown for all adults with learning
difficulties is: under 18s = 26 people (2.7%), 18 – 30 years = 242 people (25%),
31 – 50 years = 382 (40%), 51 – 65 years = 205 (21%) and 65 years and above =103 people (10.3%)
In relation to those in the 65 years and above group – the following information has been obtained:
Gender: There are 60 females and 43 males
Ethnicity: White British (100), Jewish (3),
Service Packages: 77 people have a service package and 26 people do not have one.
Living Arrangements:
Supported Accommodation: (41 people)
Permanent Residential Care (14 people)
Permanent Nursing Care (4 people)
NHS Provision - NHS Funded Care (1 person)
Community (43 people)
The average weekly cost to place a person in Supported Accommodation (based on a random
sample of 30 cases) is approx £580 per week. This is the gross cost and does not reflect any
contribution from Supporting People or ILF where applicable.
Geographical Spread:
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Information obtained from NHS Salford (GP Practices)
The following information has been extracted from 37 of the 54 GP Practices in Salford. This is
because the remaining practices are still in the process of confirming the names of their patients with
learning disabilities. This data will be re-extracted in May 2010 when all the GP Practices will have
confirmed ‘learning disability registers’. It will then be extracted on an annual basis.
A total of 660 patients (age 18 years and above) are identified on the ‘Learning Disability Registers’
at the 37 practices. Only 67 patients (9%) were aged 65 years or above. This low percentage may
alter when all 54 practices have confirmed registers. The age breakdown for the 37 practices is as
follows:
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18 – 24 years (15%) 99 patients
25 – 34 years (16%) 105 patients
35 – 44 years (21%) 140 patients
45 – 54 years (22%) 147 patients
55 – 64 years (15%) 102 patients
65 – 74 years ( 7%) 51 patients
75+ years
(2%) 16 patients
The health data that was extracted for the 37 practices identified a high incidence of Obesity (39%),
Epilepsy (25%), Hypertensive Disease (13%) and Asthma (10%).
8. Details on Salford’s population of people with Down’s syndrome 30yrs+
There are 82 adults with Down’s syndrome, age 30 years or above, who are registered on care-first
(39 females and 43 males). Three of these people are also 65 years or above and 29 are between
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the ages of 50 and 64 years.
Geographical Spread: (Adults with Down’s syndrome (over 30 years) in Salford)
Details on people with Down’s syndrome known to the LD Psychology Team (New Directions)
There are 71 people with Down’s Syndrome recorded on a database held by the Psychology Team at
New Directions (30 years or older). The database is currently being updated to ensure that all people
with Down’s syndrome are included.
Baseline screening for all those on the database is being undertaken as part of a ‘Dementia
Screening Project’. A total of 30 people from the list have already had at least one dementia
assessment (baseline screen). Plans to provide screening for the other individuals are in place, with
funding allocated (£1000) to achieve this.
The ‘Dementia Diagnosis Pathway’ is offered to those people where concerns of dementia are
present. Since this pathway commenced (September 2008) a total of 80 dementia assessments have
been completed (this includes re-assessments) for a total of 36 people.
All the work related to people with LD and dementia is done collaboratively with mainstream services
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for older people.
The number of people with Down’s syndrome with a confirmed diagnosis of dementia is 7 people;
they all have Alzheimer’s disease and are on Aricept medication (anti-dementia drug). The number of
people without Down’s syndrome who have a diagnosis of dementia is 1 person (vascular type).
Previous calculations have estimated that statistically there should be about 17 people in Salford with
Down’s syndrome and Alzheimer’s disease but presently we only know of 7 people (all females) who
fall into this category. Further calculations would suggest that the total number of people with learning
disabilities that could have a form of dementia is 24 adults. This suggests that the service has
presently only identified about a quarter of people with dementia and the other three-quarters may be
missing out on diagnosis and treatment plans.
9. Additional Information
Respite Provision
A total of 73 people use services provided by the Salford Adult Placement Team (New Directions) of
whom 4 individuals are over 65 years with a further 11 people over 50 years. A total of 12 individuals
have Down’s syndrome and are 30+ years old.
A total of 98 people use the respite service at Granville. Only one person is over 65 years but 22
people are over 50 years of age. A total of 10 individuals have Down’s syndrome and are 30+ years
old.
Daycare Provision
Figures for Day Services (Princes Park, Craig Hall, Waterside, St Georges) show that of the 266
people on their database a total of 8 people are 65 years or above. One of these individuals does not
have a learning difficulty but is a vulnerable adult. A total of 65 people are between the ages of 50
and 64 years. The Day Services have a record of older people and age related issues, for example
retirement plans, are addressed at reviews.
Employment
A total of 125 adults with learning difficulties are known to Supported Employment. Nobody is aged
65 years however there are 32 people between the ages of 50 and 64 years.
10. Health Issues
For all older people, maintaining their physical and emotional well-being is important to minimise the
risk of developing age -related illnesses and health problems. The same is true for people with
learning disabilities but they may need additional support with this.
The health concerns for older people with learning difficulties are the same as for all older people; but
additional complications may arise from problems with communication, consent, diagnostic
overshadowing and failure to recognise early signs/symptoms of ill health. In addition, carers (family
carers and/or paid staff) may be unaware of the range of health conditions that may present with
increasing age.
The following list identifies some of the health concerns that older adults with learning difficulties may
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experience:
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Mental health problems:- conservative estimates from the department of health suggest that
in the UK mental health problems are present in 40% of older people who attend their GP, in
50% of older adult inpatients in general hospitals, and in 60% of adult care homes.
Sleep difficulties:- commonly experienced by people with learning difficulties as they get older
and/or develop dementia.
Cardiovascular disease and stroke
Hypertension and heart disease
Chronic respiratory disease
Cancers
Orthopaedic problems:- decreased mobility and arthritis
Hearing loss
Visual impairment and cataracs
Foot problems
Falls and accidents
Tinnitus
Chronic sinusitis
Diabetes
Dementia
Psychological and emotional health problems:- contending with loneliness / bereavement /
retirement / moving home.
Sexually transmitted disease
Menopause
Malnutrition – higher risk for older people given their additional communication barriers.
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Health issues specifically related to people with Down’s syndrome include:
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Congenital heart problems
Leukaemia
Visual and hearing problems
Thyroid disorders (Hypothyroidism and Hyperthyroidism)
Depression
10. Summary & Recommendations
This report has highlighted the range of services in Salford for older people and the commitment of
statutory services to work in partnership with older people and their carers to ensure that appropriate
services are provided.
Older people with learning difficulties may often require support from a number of services owing to
the complexity of their needs. They may require support from mental health services, mainstream
services for older people, generic dementia services and/or voluntary agencies. To ensure that older
people with learning difficulties receive the right care in the right place we need to have good
communication and coordination between agencies. The Royal College of Psychiatrists support this
in their publication Raising the Standard (2006) by advocating ‘the development of joint working
practices between learning difficulty services, mental health services and older people services’.
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The following recommendations build on the good practices and initiatives that are already in place.
The recommendations are neither prescriptive or in priority order, but provide the Learning Difficulty
Service with key areas to consider and address. The recommendations specifically relate to
improving services for older people with learning difficulties (and Down’s syndrome) and therefore do
not include the recommendations / work-plans already in place by mainstream services. Details of
plans to improve mainstream services for older people can be found in the JSNA (2008–2013) and in
Salford’s Strategy for Older People: Growing Older in Salford (2009). It is important to reiterate that
the plans in both these mainstream reports will also benefit older people with learning difficulties.
The challenge is to provide services and opportunities for older people with learning difficulties that
would be afforded to any older person in Salford. This challenge is well described in the Mansell
report (2007) as;
“life for people with major disabilities supported by good services will often look quite ordinary, but
this ordinariness will be the product of a great deal of careful planning and management”
Recommendations
1. Produce and maintain a register of older people with LD
To build on the data contained in this report so that we have a record of every individual over 65
years. The register should contain key information so that we can check ‘at a glance’ that everyone
on it has been offered / provided with services such as a community care assessment, person
centred plan, carers assessment, benefits check, health check, respite care and has been provided
with leaflets and/or information on services available for older people.
2. Support older people to maintain and develop friendships
To explore ways to support older people to maintain social links with friends and family as isolation
and loneliness can be contributory factors to depression and ill health. To explore how assistive
technology can help older people be more independent; which can have a positive effect on their
ability to invite friends to their own home.
3. Further explore the needs of Older Family Carers.
There is already a lot of information about older carers (approximately 80 carers over 65 years and
13 carers are over 80 years) but specific data is needed on how many older people with LD live with
older family carers. The needs of these older carers (carers’ assessments) can then be checked to
ensure that future plans (and emergency plans) are in place. Many older people with LD and carers
are mutually dependent on each other and therefore plans need to be made to reflect a change in
either person’s circumstances. Information on their future housing and support requirements need to
be obtained. The checking of carers grants / breaks / finances for older family carers is also important
for this group. The identification of ‘hidden’ older family carers, including those from minority ethnic
communities, is also important to achieve.
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A support group for older family carers is recommended by the GOLD project; who reported that
these groups are effective for increasing carers’ knowledge of services and giving people greater
confidence about the future. (In Salford, approximately 1 in 5 people with learning difficulties who are
over the age of 50 years are still living with a family carer(s) and more than 1 in 3 carers are over the
age of 65)
Any support for carers to be done in collaboration with Salford Carers Centre and other mainstream
voluntary services such as Age Concern and Crossroads.
4. Person Centred Plans (PCPs)
Support older people with LD to develop PCPs. This should include their current needs and choices
and their future age related needs and aspirations. To date, there have only been a couple of people
who have been supported to have a PCP who are 65 years old or above; although a number of older
carers have been supported in ‘person centred approaches’ to think about and plan for the future.
5. End of Life Care
People with a terminal illness should receive palliative care that is properly informed by normal ‘good
practice’ especially in regard to symptom control, pain relief and access to mainstream hospice
services. Where care departs from normal clinical pathways then this should be in persons ‘best
interests’ and the reasons clearly documented.
People with learning disabilities should be helped to die at home unless their needs are too complex
or their dying too protracted for this to be managed at home. The criteria for entry into specialist
services should be the same for those people who don’t have learning disabilities, including equitable
access to mainstream hospice services. This is a key recommendation from the GOLD Project.
The End of Life Care tools (used in Salford) should be discussed / offered where appropriate. This
includes the Liverpool Care of the Dying Pathway (LCP), the Preferred Priority of Care (PPC) and the
Gold Standards Framework (GSF). These tools improve choice for place of care and death and
prevent inappropriate admissions.
Annual audit of deaths – review interagency working to establish that people with LD received
appropriate care and support prior to and at the time of death.
6. Increase Personalised Care for older people with LD.
Identify and increase the number of people on personal budgets – giving older people choice and
control over how their social care budget is allocated, used and managed.
In Salford if an individual is at moderate, severe or critical risk of losing their independence or their
health and safety is at risk, they will be eligible for statutory support. An assessment will be
completed (with support from social care worker or other person if needed). Once completed, the
answers will be scored and translated into a cash amount as part of the "Resource Allocation
System" (RAS). This indicates the amount of money used to devise a support plan. Once agreed the
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final cost of the support plan is confirmed as the personal budget.
7. Provision of Training.
Identify training needs (training needs analysis) for staff who support older people with LD and for
staff who support people with Down’s syndrome. Explore options for delivery. Extend this training to
staff in residential and nursing home settings. The LDAF (Learning Disability Awards Framework)
training includes units on older people e.g. dementia, menopause, terminal care.
Work in collaboration with Salford Carer’s Centre to offer training, information and advice to family
carers related to the needs of older people with LD and the services available to support them and
the person they care for.
8. Reflect needs of older people / people with Down’s syndrome in JSNA.
Add findings from this report to the section on older people in the JSNA – as and when the JSNA is
refreshed / updated. To also include the findings on the health status of older people with LD
following analysis of the health checks presently being undertaken by GP Practices.
9. Promote use of mainstream services for older people with LD.
Provide information to those who support older people with LD on the range of options and
opportunities available in Salford. This information to go to both staff and family carers as well as to
older people themselves. This may require face to face visits and/or the provision of leaflets etc.
Continue to work with older peoples services to identify the uptake of mainstream services by older
people with LD. Where uptake is low – identify possible causes and support them to become more
inclusive and accessible.
10. Promote advocacy service
Identify and increase the number of older people offered/provided with advocacy support.
11. Identify older people with LD within prison
Identify and address the needs of any older people within the prison services within Salford.
12. Social and Leisure Opportunities
Continue to work collaboratively with leisure services to ensure provisions are accessible for older
people with LD. Engage with users and carers to identify their experiences of using local facilities and
use these findings to propose changes and/or service developments.
Explore the role that voluntary and third sector services can play in supporting older people to enjoy
social and leisure activities. This could range from volunteers supporting people to ‘tea dances’ to
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commissioning ‘Age Concern’ to undertake specific programmes of work with older people with LD.
Help the Aged already have an ‘older people with complex needs programme’ – therefore to explore
how this can benefit older people with LD.
13. The ‘Dementia Diagnosis Pathway’ and the ‘Dementia Screening Project’
Continue to implement and review the ‘Dementia Diagnosis Pathway’ and the ‘Dementia Screening
Project’ for people with Down’s syndrome. The results to inform the future work of both specialist and
mainstream services.
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References
Braddock, D. (1999) Ageing and developmental disabilities: Demographic and policy issues affecting
American families. Mental Retardation, 37, 155-161.
Emerson E and Hatton C (2008) Estimating Future Need for Adult Social Care Services for People
with Learning Disabilities in England http://eprints.lancs.ac.uk/21049/
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HM Government (2009) Valuing People Now: a new three-year strategy for people with learning
disabilities. Making it happen for everyone
www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Learningdisabilities/index.htm
Janicki,M.P. & Dalton,A.J. (2000) Prevalence of dementia and impact on intellectual disability
services. Mental Retardation, 38, 276-288.
Services for people with learning disabilities and challenging behaviour or mental health needs,
guidance, Department of Health, 2007 (Mansell report (revised edition 2007)), Gateway 9019, page
13
The Foundation for People with Learning Disabilities (2002) Today and Tomorrow: The report of the
Growing Older with Learning Disabilities Programme. London: The Mental Health Foundation.
Bibliography
Dementia and People with Learning Disabilities: Guidance on the assessment, diagnosis, treatment
and support of people with learning disabilities who develop dementia. The British Psychological
Society. Sept 2009.
Dementia in Older adults with intellectual disabilities:A report on the State of Science on Dementia in
older adults with Intellectual Disabilities by the IASSID Special Interest Research Group on
Ageing and Intellectual Disabilities. (March 2009)
Down’s syndrome and Alzheimer’s Disease: A guide for parents and carers. Down’s Syndrome
Associaton.
Equal Treatment: Closing the Gap DRC
Equality in Later Life: A national study of older people’s mental health services. Healthcare
Commission. March 2009
Improving the health and well being of people with learning disabilities. DH (2009)
Independence and Opportunity: Our strategy for Supporting People. Department for Communities
and Local Government (June 2007)
Living Well with Dementia: A National Dementia Strategy DH (2009)
Personalisation: a rough guide. Social Care Institute for Excellence (2008)
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What to expect as you get older. Age Concern England (2008)
Appendix 1
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Appendix 2
Appendix 2