1. Person with Down Syndrome Aged 40 years + Person with Down Syndrome Aged 40 years + Health Action Plan Health Action Plan Annual Health Check Annual Health Check No diagnosis of Dementia No diagnosis of Dementia NHS services Virtual Team Suspected Dementia Suspected Dementia i i Dementia Screening pathway for people with Down Syndrome WLDP Social care services Voluntary / independent sector Voluntary / independent sector Care Programme Approach Care Programme Approach Person with Down Syndrome Aged 30 years + Person with Down Syndrome Aged 30 years + Baseline Gain consent For assessment and entering on database Gain consent For assessment and entering on database Cognitive assessment Cognitive assessment Repeat every 2 years Repeat every 2 years Carer observes changes in behaviour Carer observes changes in behaviour Use a more Comprehensive assessment tool Use a more Comprehensive assessment tool MDT assessment Confirmed Dementia Confirmed Dementia

2. People with Down Syndrome Back to pathway Dementia Dementia is the name given to a collection of illnesses, one of which is Alzheimer’s Disease, that have a characteristic pattern of symptoms and signs that generally occur later in life. Dementia is a progressive and largely irreversible clinical syndrome characterised by a widespread impairment of mental function such as : memory loss, language impairment, disorientation, change n personality, difficulties daily living, self neglect and behaviour which is out of character (aggression, sleep disturbance or sexual inhibition) (Scope 2004). People with Down Syndrome People with Down’s syndrome over the age of thirty are at greater risk of developing the symptoms of dementia. By their fifties approximately 50% will be showing evidence of memory and other problems associated with having Alzheimer’s disease (Down Syndrome Association 2004). Also people have worse health and an increased risk of early death compared with the general population. Research has shown that many people have undiagnosed and untreated health problems Screening All people with Down Syndrome in Westminster age 40+ therefore should be offered an annual health check and a health action plan. To assist with the diagnosis of dementia, people should have a two yearly cognitive assessment. i

3. Annual Health Check How to get an annual health check Most GPs in Westminster now provide an annual health checks for people with learning disabilities. Contact PALS on 0800 587 8818 to check if your GP provides this service or if you have problems getting a health check. You can order a pre-health check questionnaire to help you prepare for the health check. Most services will have a copy, but you can contact the Westminster Learning Disability Partnership for a copy on 020 7641 7411. Health Check for people with Down Syndrome (Down Syndrome Association 2004) Dementia – Initiate baseline assessment and subsequent cognitive assessments. Depression- People might be more prone to depression. If severe, this can have similar features as dementia. Thyroid disorder – An under-active thyroid is more common in older people. Features include dry skin, general mental and physical slowing, increased intolerance of cold and unexplained weight increase. Hearing – Build up of ear wax is common. Fluid behind the eardrum which may require draining (referral to ENT needed), Inner Ear problems- referral needed for comprehensive hearing evaluation. Visual Impairment – With age this is likely to deteriorate. Yearly- two yearly check recommended with an optometrist checking for Cataracts (the occurrence of this in older people is established). Orthopaedic problems – increased sensitivity to instability in the neck joint (yearly physical examination recommended). Menopause – women with Down’s Syndrome appear to reach the menopause 5-6 years earlier (average age 46) Continue a

4. Annual Health Check Continued Health Check for people with Down Syndrome (Down Syndrome Association 2004) Check for respiratory diseases Check for Cardiac Disease Check BMI according to chart appropriate for people with Down Syndrome Check for epilepsy- Dementia onset is more likely to be preceded by development of epilepsy( such as jerks etc) Medication Review and medication side effects Back to pathway a

5. Health Action Plan i Back to pathway What are Health Action Plans? Health Action Plans are hand held health records that are based on a health check in primary care. They show what the person wants to do to improve their health and they also show any support that is needed. Check The Directory’ or call the Westminster Learning Disability Partnership on 020 7641 7411 to find out who could act as a Health Facilitator. The Health Facilitator will help in developing the Health Action Plan. What should go in a Health Action Plan? These areas should be addressed - oral health and dental care, fitness and mobility, continence, vision, hearing, nutrition, emotional needs, medication taken and side effects, records of any screening tests. Ensure that all items and their follow up actions listed under the annual health check are outlined in the Health Action Plan as well. For all people with Down’s Syndrome over the age of 40: Include a heading on dementia care under mental health. This should outline who is going to do the two yearly assessment, with clear dates identified.

6. Cognitive Assessment a Back to pathway Insert info on the assessment form Who should undertake the assessment: It is important that the person who undertakes the assessment knows the individual well. Therefore it should be a named person, who is identified within the Health Action Plan. For all people with Down Syndrome over the age of 30 the assessment should be identified as an action in their Health Action Plan. The first assessment will form the: Baseline assessment 6 monthly assessment The first assessment will act as a baseline. Subsequent assessment will assist the clinician to make a diagnosis of dementia. To do this it is Important that the assessments are repeated on a: The comparison between the six monthly assessments together with the outcome of the annual health check will assist the clinician in diagnosing dementia. Any diagnostic outcomes should be fed back to the Virtual Team who will oversee this program.annual health check

7. No Diagnosis of Dementia i Back to pathway If there is no diagnosis of dementia, then continue the two yearly cycle of assessment. Ensure that this will continue to feature in the Health Action Plan and that future annual health checks are regularly attended

8. Diagnosis of Dementia Back to pathway i If the clinician diagnosis the the person has dementia then the following action have to happen: Inform the virtual team Inform the GP Place person on Care Programme Approach to ensure that appropriate interventions are being offered.

9. Virtual Team c Back to pathway Membership Dr Ingrid Bohnen Steve Carnaby Debbie Hawkins Jude SeetingStephanie PriceCarol Nutbrowne Keelie Charlick Sally Hampshire LD Nurse GP?Stephan Brusch OT Physio SALT Terms of Reference To oversee the implementation of the Dementia screening programme for people with learning disabilities living in Westminster To pilot the new pathway on people with Down Syndrome age 40+ To ensure that all people with Down Syndrome have annual health checks and Health Action Plans. To oversee the coordination of care of people with dementia, ensuring that they are offered a CPA To ensure that interventions offered are in line with Best Practice Guidance (Edinburgh Best Practice Guidelines). To develop and monitor a register of people with learning disability with dementia and an at risk register and to feed relevant commissioning information to the joint commissioner.

10. Care Programme Approach (CPA) i Back to pathway People with a diagnosis of dementia and learning disability should be placed on CPA (enhanced?). 1.Assessment of risks and needs (housing, health, money, etc) 2.Care plan 3.Care Co-ordinator (supported by virtual team) 4.CPA Reviews 5.Health Action Plan needs to be integrated into the CPA

11. Primary Care Service a Back to pathway To undertake annual health checks using the designated template (EMIS and Vision) and to check items outlined in the annual health check. To undertake additional physical test aiding the diagnosis of dementia. To trigger cognitive assessment. To ensure that people diagnosed with dementia are included in dementia register, using the following READ codes: Eu02% Dementia in other diseases classified elsewhere E00..% Senile and presenile organic psychotic conditions Eu01.% Vascular Dementia E02y1.% Drug-induced dementia E012.% Other alcoholic dementia Eu00.% Dementia in Alzheimer’s disease E041. Dementia in conditions EC Eu041 Delirium superimposed on dementia F111 Pick’s disease F112. Senile degeneration of brain F116 Lewy body disease

12. Primary Care Service Back to pathway To undertake a Dementia Health review for those patients diagnosed with dementia: Undertake a mental health review Psychiatry Care Plan MH personal health plan MH disability assessment MH medication review

13. Westminster Learning Disability Partnership c Back to pathway

14. Social Care Services i Back to pathway

15. Voluntary Sector i Back to pathway

16. References: i Back to pathway Scope (20040 Dementia the treatment and care of people with dementia in health and social care Down Syndrome Association (2004) Ageing and its Consequences for people with Down’s Syndrome. A guide for parents and carers Down Syndrome Association (2004) Down’s Syndrome and Alzheimer’s disease. (2006) Dementia guidelines for Vision Templates Check