Dementia in People with a Learning Disability A Care Pathway Using a Collaborative Approach ANDREW GRIFFITHS

2 Agenda 1.Dementia and Learning Disability 2.Details of Screening Programme 3.Results of Programme 4.Care Pathway 5.Service Structure 6.Future Directions

3 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

4 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.

5 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.

6 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).

7 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

8 Dementia and Learning Disability Wide differential diagnosis which includes 1. Physical problems include such conditions as hypothyroidism, 2. Sensory impairment 3. Mental health problems, the most common differential diagnosis is depression 4. Iatrogenic causes, medication with anticholinergic side effects 5. Impact of life events, abuse, impact of poor environment.

9 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.

10 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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13 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.

14 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.

15 Care Pathway

16 Outcomes 3 people were commenced on cholinesterase inhibitors 1 person died (non dementia related) 4 people had either physical health issues or environmental factors

17 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).

18 Meetings Consultants, Older Adult and LD Memory Clinic senior sister CLDT nurses (usually 2) Others Rolling agenda – discuss people screened, plan future developments

19 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

20 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

21 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?