The growth of demenTIA IN LEARNING DISABILITY: opportunities and standards

1. ISABEL MELO & SHEKHAR MUKHERJI THE MENTAUR GROUP The growth of demenTIAIN LEARNING DISABILITY:opportunities and standards

2. DEMENTIAIN LEARNING DISABILITY THE NUMBERS

3. 60,000 people with DS in the U.K. 15-20% of LD pop. • Incidence for Downs Syndrome (DS) remains stable • Longevity in DS – 9 yrs (1900), 25 yrs (1983), 49 yrs (1996), now around 56 yrs. Currently 25% people with DS survive to 62 years • Increasing survival of persons with DS - increasing dementia prevalence. • Bulk of early onset dementia occurs in LD/DS population • Almost all people with DS who develop dementia have Alzheimer’s disease (AD). Down’s Syndrome (DS)

4. At present there are more than 7500 people over the age of 50 years with Downs Syndrome (DS) & dementia One estimate is of 1,400 DS + AD new cases per year Peak incidence early fifties. People with DS over the age of 65 have a two in three chance of developing dementia Mean survival of people with DS & AD after diagnosis between 2 to 3 years DS & AD

5. 30-39 years 2% • 40-49 years 9.4% • 50-59 years 36.1% • 60-69 years 54.5% Prasher 1995 • 30-39 years 3% • 40-49 years 10% • 50-59years 40% Holland 2000 Prevalence Rates Down’s Syndrome and Alzheimer’s Disease

6. 18 to 25% incidence over the age of 65 Dementia 3 to 4 times more common in LD versus general population of similar age Pattern of causes of dementia same as general population. Starts about 10 years earlier. Between diagnosis and death 3-5 years. PEOPLEWITHA LD & DEMENTIA WHO DO NOT HAVE DS

7. CARE& SUPPORT PROVISION

8. Notwithstanding the demographic changes we have highlighted within the population of people with a learning disability, holistic dementia services are minimal and very unevenly distributed across the country

9. WHYAREWEINSUCH A MESS? • Commissioners and providers tend to rely on ad hoc arrangements. These generally do not meet the needs of the person with dementia, other users of service and staff. This includes the inappropriate transfer of the person with dementia to a generic residential/nursing facility for dementia. • Sometimes needs change fairly quickly in a person with dementia . Funding applications may take time and by the time funding comes through needs may have changed.

10. Staying at home with proper support services Here people remain in their own home, with appropriate support from trained staff and with necessary environmental modifications. This includes generic residential learning disability services. • Move to specialist residential provision A good option in a variety of scenarios • Move to generic elderly dementia services The least preferred option though not uncommon in today’s ‘value for money’ and cost cutting environment. Models of Care

11. SPECIALISTRESIDENTIALSERVICES • While designing environment and selecting staff take into account: other diagnoses associated with LD e.g. autism, mental health problems, epilepsy & dementia specific issues • Small homely units with a maximum of 8 people • Home for life with planning for palliative care and end of life issues • Philosophy changes from enablement to preserving skills and ensuring health and safety.

12. ASSESSMENT & DIAGNOSIS

13. Triad of memory loss, skills loss and mood changes. Associated behavioural changes. Apraxia (Inability to undertake tasks….. loss of skills) Agnosia (Inability to identify objects) Aphasia (Inability to use and understand words) In severe and profound LD with behavioural changes and health changes Howdoes dementia present?

14. ROLL BACK MEMORY LOSS

15. Dementia diagnosis • Establish baseline cognition & baseline health/function • Show cognitive decline over 6 mths and health/functional decline (e.g. aphasia, apraxia, agnosia). • Exclude any health cause of decline (e.g. sensory impairment, coincident disease) • Behavioural changes & personality change may precede in DS-AD. Seizures.

16. From 30 years onwards for all persons with DS with prospective monitoring • From ? 50 years onwards for all persons with other causes of learning disability • In the absence of formal baseline testing gather carer/relative/friend information ‘If you do not know the past of the person with dementia then you do not know them’ Baseline Assessment

17. Generic assessment tools inappropriate • No single battery universally used in U.K.. Should include direct assessment and questionnaire assessment with all sufferers. • Look for assessments on file. Repeat same assessment protocol • With PMLD, pre-morbid cognitive ability so poor that changes undetectable on testing. Carer reports take precedence Assessment Tools

18. General Dementia Screening Tools – DLD, DSQIID, ABDQ • Neuropsychological Assessments – DSDS, NAID, Severe Impairment Battery, Dalton Brief Praxis Test • Informant Questionnaires – CAMDEX – DS Informant Interview • Assessments of Daily Living – AAMD Adapted Behaviour Scales, Hampshire Social Services SSLA • Depression inventories/screening tools Assessment Tools

19. ‘If you do not know the past of the person with dementia then you do not know them’ Can be the most important source of pre-morbid information Life story books and memory boxes build up a reservoir of knowledge about the individual Enables the understanding of certain individual behaviours and acts as a tool in reminiscence therapy Life Story Work

20. Baseline information issues Inexperienced professionals Carers not picking up changes. May increase prompting Denial Reluctance to seek help Concurrent medical problems Problems with diagnosis

21. 49 year old man with DS 6 months increasing confusion. Particularly forgetting names More quiet & withdrawn. Lethargic Episodic insomnia ADL normal Urinary incontinence A Real Life Example

22. Formal assessment inconclusive – some evidence of global decline, especially in social skills • Further history from another carer indicated recurrent UTI’s in the past • GP involved. UTI treated. Cognitive abilities & social skills returned to an acceptable level but not previous level A Real Life Example

23. Followed up by dementia team 6 monthly - no further change until follow up at 2 years. Repeat formal assessment at 2 years suggests global decline in cognitive and other skills. Mood and behaviour reasonable. At 3 years significantly worse & at risk A Real Life Example

24. DEVELOPING STANDARDS FOR CARE & SUPPORT

25. STANDARD ONE ASSESSMENT SERVICE

26. Suitable training of staff in chosen assessment procedure. Staff awareness training on dementia • For a service providing care or support, do a baseline evaluation (including environmental assessment) of those with DS by age 30 years and all users of service by age 55 years. Prospective monitoring to continue. • Use checklists at annual reviews • Do necessary health checks e.g. thyroid status, depression, sensory impairment etc. • If evidence of dementia, do a needs assessment. ASSESSMENT & DIAGNOSIS

27. For persons living in their own home or tenancies assess whether appropriate environmental adaptations can be safely made and trained staff can support • For persons living in group homes assess as above and also impact on other users of service • Sharing the information with the person and carers • Draw up support/care plans based on assessment In the absence of internal expertise access an NHS memory assessment service ASSESSMENT & DIAGNOSIS

28. STANDARD TWO APPROPRIATE PHYSICAL ENVIRONMENT

29. Space & Light. Calm & Predictable Normal Housing Wheelchair friendly Multiple secluded living areas Visual needs Orientation and familiarity for a younger population Look outs to street Stimulation. Smells & food presentation Safety & barriers

41. Reduction of image contrast and vividness of colour Difficulty with discriminating between certain colours Increased time to adjust to changing light levels Patterns, shiny floors, the colour black & shadows Marked reduction in retinal luminance with ageing Vision in dementia

42. The Ageing Eye

48. STANDARD THREE STAFF & STAFF TRAINING

49. STAFF • Staff numbers will have to increase as dementia progresses • Encourage consistency, flexibility, compassion and humour. • Ensure a robust keyworking system • Staff may need emotional support as the person’s condition deteriorates or at end of life moments • Develop reservoir of knowledge/expertise in all aspects of dementia need and services

50. STAFF TRAINING • Training needs analysis undertaken for all staff dealing with dementia. Person centred approach • Tool specific training for assessors • Comprehensive and structured in service education programme for dementia in the context of LD. Further education and qualifications encouraged • Educational/reading materials available for all issues related to supporting persons with dementia • Interdisciplinary team work, case discussion and proper reviews • Family education offered