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The Impact of Ageing on People with an ID

The Impact of Ageing on People with an ID. Tony Holland University of Cambridge. Background. Economic, social, and legislative changes during older people’s lifetime; Complexity and variability of need associated with having a LD;

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The Impact of Ageing on People with an ID

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  1. The Impact of Ageing on People with an ID Tony Holland University of Cambridge

  2. Background • Economic, social, and legislative changes during older people’s lifetime; • Complexity and variability of need associated with having a LD; • Additional complexity of need due to ageing process – disability free life-expectancy.

  3. National (England and Wales) and International Policy and Legislation 1904-1908 Royal Commission on the Care and Control of the Feeble Minded (establishment of ‘colonies’) 1913 Mental Deficiency Act 1948 Establishment of the NHS (‘colonies’ became hospitals) 1948 UN Universal Declaration of Human Rights 1959 Mental Health Act 1969 Ctte of Enquiry into Ely Hospital 1971 Better Services for the Mentally Handicapped (White Paper) 1971 Education Act (and subsequent Education Acts e.g., 1981) 1970’s and 1980’s Normalisation movement 1983 Mental Health Act 1990 NHS and Community Care Act 1993 UN Standard Rules 2002 Valuing People (White Paper for England and Wales) 2005 Mental Capacity Act

  4. Genetic advances 1908 Inborn errors of metabolism (Garrod) 1934 Phenylketonuria (Folling) 1953 Structure of DNA proposed (Watson and Crick) 1956 Human chromosome complement first described (Levan et al) 1959 Trisomy 21 as the cause of DS described (Lejeune et al) 2000+ Sequence of human genome (DNA)

  5. Changes over 20th Century Social • From institutional to community living • Segregation to integration • General to individual support • Respect for individual autonomy (choice etc) Health • Better nutrition and advances in the prevention and treatment of major infectious and other diseases • Causes of LD identified • Increasing life expectancy for people with LD

  6. Continuity and Change at mid-lifeAberdeen cohort: May and Hogg, JIDR 2000 1970 1993-1994 Residence at age 22ys approx 40yrs Family home 44/73 (60%) 20/54 (48%) Out of family 29/73* 34/54 Died 8 Non contact 11 *living in long-stay hospitals

  7. Why is ‘ageing’ a concern? Getting older is associated with: • Changes in general cognitive and physical abilities (increasing frailty) • Increased risk of mental and physical ill-health, sensory impairments etc • Changing family and social circumstances • Is this also true for people with LD? • What should the service response be?

  8. Life-expectancy in general population • Socio-economic status/geography • Gender • Diet, exercise, obesity • Smoking • Alcohol • General health (blood pressure, screening programmes) • Genetic background

  9. Ageing? For people with LD • Is the ageing process the same or different? • Do same factors predict outcomes in later life? • What is ‘old age’? • Do age-related disorders cluster towards the end of life? • How should this inform planning?

  10. Ageing and health status Janicki et al, 2002 Adult group homes in NY State Age group 40-79 years (n=1371) • General good health (81%) • Cardiovascular, musculo-skeletal, respiratory and sensory impairments, & infectious diseases increased with age – variation according to LD etc • Neurological problems (epilepsy) • Down’s syndrome (specific risks) Some age-related health problems generally less prevalent than the general population (e.g., cardio-vascular) Objective measures of ‘wellness’ less good e.g., lack of exercise, dietary insufficiencies

  11. Comparative Rates of Dementia - Down’s syndrome, I.D., General Population Cooper, personal communication

  12. Age-specific Prevalence of LD Fryers, T., (1991) Estimates of age-specific prevalence of severe intellectual impairment in an average English District of stable population circa 1990 Age (years Ratio/1000 population 0-4 ?2.5 5-9 3.0 10-14 4.0 15-19 4.5 20-24 5.0 25-34 4.0 35-44 3.0 45-54 2.5 55-64 2.0 65-74 1.0 75+ very few

  13. Life expectancy 1901 2002 male female male female Gen. Pop 45 49 81 84 People with DS 9 50 Mortality rates (1990s) People with mild LD 1.7 that of GP People with profound LD 4.1 that GP

  14. Ageing among people with specific syndromes Prader Willi Syndrome

  15. Age-specific prevalence of people with PWS in one Health Region 20 * * * * 10 * * * * * * * * * * * * * 0-2 3-5 6-8 9-11 12-14 15-17 18-20 21-23 24-26 27-29 30-32 33-35 36-38 39-41 42-44 45-47 48-50 51-53 Estimated birth incidence 1: 29,000 Estimated population prevalence 1:52,000

  16. Cambridge PWS Study Assuming no age-specific ascertainment bias Estimated birth incidence 1:29,000 Estimated population prevalence 1:52,000 Estimated mortality rate: 3% across the age-range or 7% per year over age 30 Whittington et al, 2001

  17. Population-based Study of PWSPsychotic Illness Number with psychotic illness 7/25 (28%) Age 18-27 age 28+ Del (15q11-13) 0/4 1/9 (11%) UPD 0/3 5/5 (100%) Other* 0/3 1/1 Total 0/10 7/15 (49%) *Imprinting centre mutation Boer et al, 2002

  18. Ageing as it affects people with DS

  19. Down syndrome: Neuropathological Hallmarks

  20. Age-specific prevalence rates of dementia in people with DS Age (years) 30-39 40-49 50-59 60+ Total (n=29) (n=29) (n=15) (n=2) (n=75) AD 1 (3%) 3 (10%) 6 (40%) 0 10 (7%) Holland et al, 2000, B. J. Psych

  21. DS Cross Sectional StudyConclusions Reported changes: • Personality/behaviour 30 years + • Change in several domains 40 years + Peak incidence of dementia • Frontal-like 30s & 40s • Alzheimer disease 50s

  22. Clinical Practice Person with DS in later adult life has been observed to change in behaviour and/or memory etc Referral for assessment Diagnostic assessment History, examination, investigations Explanation of reported change – differential diagnosis (e.g., dementia or something else) Establishment of support/treatment plan Evaluation of support strategies

  23. Differential diagnosis of decline in later life • Dementia (AD) • Depression • Hypothyroidism • Sensory impairments • Life changes • Other

  24. Life expectancy and aged related morbidity in people with LD • Factors in the general population (people with mild LD) – illnesses undetected and help not sought; • Life expectancy influenced by additional factors than those in the general population (e.g., severity and cause of LD & associated illnesses) • Specific causes for LD associated with particular risks in later life (e.g., DS; PWS)

  25. Implications for policy and practice • Life expectancy will increase • Greater proportion of people with LD will live into old age and develop age-related illnesses; • ‘Ageing’ and associated problems not just related to chronological age (e.g., DS) • Social care needs in retirement

  26. Implications for policy and practice • Awareness of age-related health risks and specific risks associated with some causes of LD; • Services that can adapt and respond to changing need; • Links with local health and social care services and voluntary agencies

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