Dementia in People with a Learning Disability

A Care Pathway Using a Collaborative Approach

ANDREW GRIFFITHS

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Agenda

1. Dementia and Learning Disability

2. Details of Screening Programme

3. Results of Programme

4. Care Pathway

5. Service Structure

6. Future Directions

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Dementia and Learning Disability

• Dementia and People with Learning Disabilities

• Guidance on the assessment, diagnosis, treatment and support of people with learning disabilities who develop dementia

• CR155

• September 2009

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Dementia and Learning Disability

• Report for Faculties of Old Age Psychiatry

& Learning Disability

• TRAVELLING ALONE OR TRAVELLING TOGETHER? THE INTERFACE BETWEEN LEARNING DISABILITY AND OLD AGE PSYCHIATRY.

• Prof Susan M Benbow 2010.

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Dementia and Learning Disability

• 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.

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Dementia And Down’s Syndrome

• Studies have reported rates of dementia meeting the necessary criteria that start at a few percent between 30 and 39 years of age,

• increasing to between 10 per cent to 25 per cent in the 40- to 49-year-old group and

• to 20 per cent and 50 per cent in the 50- to 59-year-old group and

• between 30 per cent and 75 per cent aged 60 years or older (Hewitt et al., 1985; Wisniewski et al., 1985; Lai & Williams, 1989; Holland et al., 1998).

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Dementia And Down’s Syndrome

• the peak incidence is in the early fifties

• changes in behaviour or loss of skills, rather than functional memory decline, are the early signs of developing dementia

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Dementia and Learning Disability

Wide differential diagnosis which includes1. Physical problems include such conditions as

hypothyroidism, 2. Sensory impairment3. Mental health problems, the most common

differential diagnosis is depression4. Iatrogenic causes, medication with

anticholinergic side effects 5. Impact of life events, abuse, impact of poor

environment.

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Screening (for people with Down’s Syndrome)

• first baseline screen at 30 years

• then every two years for those in their 40s

• annually for those aged 50 and over.

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Process

• Initially attempts to identify all people with Down’s syndrome in Wolverhampton

• GP

• Social care

• Residential and supported living schemes

• Day care

• Schools and colleges

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The prevalence of inidividuals with Down's syndrome aged over 30 known to services in Wolverhampton

0

0.2

0.4

0.6

0.8

1

1.2

1.4

30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69

Age group

Prevalence per 1000

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0

10

20

30

40

50

60

70

80

White Black Asian Mixed Other

Ethnic groups

Percentage of population in Wolverhampton

People with Down's syndrome

General population

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Next Step

• Initial contact was made through an accessible letter to introduce the screening project.

• Follow up with a phone call to explain the process further and deal with any queries.

• Appointment made for screening at person’s home or day care.

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Screening Results

• 67 people identified as eligible for screening

• 65 (97%) consented to be screened• Screening instrument used BSCOC

(Broad Screen Checklist of Observed Changes)

• 8 people were identified as having possible dementia and were assessed further.

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Care Pathway

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Outcomes

• 3 people were commenced on cholinesterase inhibitors

• 1 person died (non dementia related)

• 4 people had either physical health issues or environmental factors

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Current Situation

• Focus is treatment for people identified with dementia

• Ongoing re testing of people with Downs’ Syndrome

• Monthly joint meetings/clinics of LD and OA service, held at Pond Lane (LD service base).

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Meetings

• Consultants, Older Adult and LD

• Memory Clinic senior sister

• CLDT nurses (usually 2)

• Others

• Rolling agenda – discuss people screened, plan future developments

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Future Plans for Screening

• first baseline screen at 30 years• then every two to three years for those in their

40s• Every two years for those aged 50 and over• Give information and who to contact if concerns

identified (e.g. loss of skills etc)• For people scoring highly on cognitive domain

and no other cause identified, consider yearly screening at any point

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Future Directions

1. Continue to build upon successful partnership working.

2. Assessments for people with suspected dementia who have LD but not Down’s Syndrome.

3. Foundation trust wide specialist service.

4. Tertiary referral assessment service

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Outcomes/Unanswered questions

• How often should we screen?• What is the evidence for this?• Are there any disadvantages to screening?• What resources are needed to deal with those

who need to be referred after screening?• Does regular screening improve outcomes?• What about people with a learning disability (but

not Down’s syndrome) who have suspected dementia?