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Quality of Life in Dementia: the medical perspective

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Title: Quality of Life in Dementia: the medical perspective


1
Quality of Life in Dementia the medical
perspective
  • Dr. Henry OConnell
  • Acting Consultant in Old Age Psychiatry,
  • Mental Health Services for Older People, Limerick
  • DSIDC November 10th 2006

2
Outline
  • Defining dementia
  • Defining Quality of Life (QOL)
  • Epidemiology of dementia
  • Measuring QOL in dementia
  • Optimizing QOL in dementia
  • Summary and conclusions

3
Historical
  • Alois Alzheimer (1864-1915)
  • Described the case of 51 yr old Auguste D. in
    1907
  • Association between tangles, plaques and dementia
    had already been described (Fuller, 1907)
  • Case novel because of young onset

4
1. Defining dementia
  • Alzheimers the prototypical and commonest
    dementia
  • Memory and other cognitive domains affected
  • Gradual and progressive course
  • Functional impairment
  • Clear consciousness

5
1. Defining dementia
  • Dementia defined by ICD-10, DSM-IV, NINCDS-ADRDA,
    etc.
  • Lack of agreement between different diagnostic
    systems
  • Progressive cognitive impairment with associated
    loss of function
  • Various aetiologies, e.g. Alzheimers, Vascular,
    Lewy Body, Frontotemporal, etc., each with
    different presentations and patterns of
    progression

6
1. Defining dementia
  • Wide range of clinical presentations (e.g.
    prominence of memory loss versus personality
    change)
  • Wide range in levels of severity (graded with
    Clinical Dementia Rating Scale, MMSE, etc.)-from
    mild problems with some functional loss to
    requirement for full nursing care

7
2. Defining QOL
  • What constitutes QOL?
  • Happiness and contentedness
  • The absence of illness
  • The ability to fulfill ones potential
  • Optimizing control of any physical, psychological
    or social problems

8
The Struldbruggs
  • Eternal life, but not eternal youth--and poor QOL
  • The least miserable among them appear to be
    those who turn to dotage
  • May have been used by Swift to highlight
    prevalent ageist attitudes

9
2. Defining QOL
  • Domains of QOL (Lawton MP, 1994)
  • Competent cognitive functioning
  • Ability to perform activities of daily living
  • Ability to engage in meaningful time use and
    social behaviour
  • A favourable balance between positive emotion and
    absence of negative emotion

10
2. Defining QOL
  • Health-related QOL is differentiated from general
    QOL-- positive aspects of life other than in the
    health sector (e.g. relationships with friends,
    meaningful time use) should also be considered

11
2. Defining QOL
  • Addressing QOL in dementia represents a
    paradigm-shift away from the mere treatment of
    illness and symptoms/signs, to the maximizing of
    ones potential in all areas of health and
    well-being (e.g. no reference to QOL in dementia
    in the Oxford Psychiatry in the Elderly)
  • In a busy and under-resourced service, optimizing
    QOL may be seen as the icing on the cake
  • QOL may also apply to families and carers of
    those with dementia

12
3. Epidemiology of dementia-the ageing Irish
population
  • Over 65 population expected to rise from 11.1 of
    population in 2001 to 19.7 of population in 2036
  • gt75s expected to rise from 4.9 to 9.5
  • gt85s expected to rise from 1.1 to 2.7
  • Estimated that 50 baby girls now born in Ireland
    will live to 100 (Department of Social and Family
    Affairs, 2006)

13
3. Epidemiology of dementia
  • 5 of the gt65s and 20 of the gt80s will have
    dementia
  • Absolute number with dementia expected to rise
    from 21.5k in 2001 to 55.75k in 2036 (Vision for
    Change)

14
3. Epidemiology of dementia
  • Ireland 18k females and 13k males with dementia
    in Ireland in 2000, with projected figures of 5k
    per year from 2001-2011 (E. OShea,
    2000conflicts with figures from Vision for
    Change)
  • Where are they?
  • 22k in the community
  • 7k in long-stay care
  • 500 in psychiatric hospitals
  • Unknown number in medical beds

15
3. Epidemiology of dementia
  • Approx. 2/3 of the general hospital population
    are age gt65
  • Approx. 1/3 of these will have depression,
    dementia or delirium (delentia)
  • Therefore, approx. 60-80 inpatients in a typical
    400-bed Regional General hospital will have
    dementia
  • Dementia associated with increased LOS and
    bed-blocking
  • Furthermore, general hospital environment not
    therapeutic for the cognitively impaired

16
3. Epidemiology of dementia
  • Therefore, dementia among the most important and
    costly medical conditions, and likely to become
    even more so in future years
  • Service planning should take into account these
    projections, i.e. the absolute numbers and the
    settings in which people with dementia reside

17
M. Powell Lawton
  • M. Powell Lawton
  • (1923-2001)
  • Director Emeritus of the Polisher Research
    Institute of Philadelphia Geriatric Centre, now
    the Madlyn and Leonard Abramson Center for Jewish
    Life
  • Past-President of Gerontological Society of
    America
  • Researched and wrote extensively on QOL in
    dementia

18
2. Defining QOL
  • Lawtons model of QOL in dementia the most
    influential
  • Principles
  • QOL should be both subjective and objective
  • 4 overarching dimensions
  • Psychological well-being (e.g. positive and
    negative affect)
  • Behavioural competence (e.g. cognitive and
    functional abilities)
  • Objective environment (e.g. caretakers and living
    situation)
  • Perceived QOL

19
4. Measuring QOL in dementia
  • Measures of QOL vary depending on
  • The range of factors taken into account
  • The type and severity of dementia
  • Patient and/or proxy responder

20
4. Measuring QOL in dementia
  • For example, factors associated with QOL are
    likely to differ widely between an individual
    with severe dementia who resides in a long-term
    care setting and requires total nursing care vs.
    someone who has early dementia and lives in the
    community with good support systems

21
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22
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23
4. Measuring QOL in dementia
  • Important to have at least some measure, to
    increase awareness of the importance of QOL and
    to monitor progress and response to interventions
  • Choice of instrument should be based on clinical
    characteristics (i.e. nature and severity of
    dementia), setting (e.g. institutional vs.
    community-based), ease of use, etc.

24
Old Age Psychiatry in Ireland
  • That fellow I was with in the Ship last night,
    said Buck Mulligan, says you have g.p.i. He's up
    in Dottyville with Conolly Norman. General
    paralysis of the insane.
  • James Joyce (1882-1941), Ulysses

25
5. Optimizing QOL in dementia
  • Since first services in Ireland in late 1980s,
    there are now approx. 25 services at different
    stages of development
  • The remit of Old Age Psychiatry is new-onset
    psychiatric illness after the age of 65, or
    dementia that is complicated by BPSD
  • Therefore, the emphasis is automatically on the
    detection and elimination of symptoms, as opposed
    to the enhancement of QOL

26
5. Optimizing QOL in dementia
  • However, treatment and elimination of symptoms
    should be seen as being synonymous with
    optimizing QOL
  • Optimizing QOL should not be seen as icing on
    the cake, but as the primary purpose for
    interventions

27
5. Optimizing QOL in dementia
  • Why optimize QOL in dementia?
  • Duty of care and moral/ethical reasons
  • Reduces risk of abuse and neglect
  • Reduces need for medication
  • Reduces cost of care?

28
5. Optimizing QOL in dementia
  • Optimizing QOL can be divided broadly into
    medical/psychiatric, social and psychological
    approaches
  • QOL strategies will vary widely depending on the
    type and severity of dementia, the clinical
    setting (i.e. institutional vs. community
    dwelling) and the levels of existing supports

29
5. Optimizing QOL in dementia
  • Patients, family members and carers should be
    targeted
  • Optimizing QOL can be thought of in terms of a
    national strategy and in terms of treatments for
    individual patients and their families

30
5. Optimizing QOL in dementia
  • Majority of those with dementia (approx. 2/3)
    live in the community
  • Therefore, QOL measures should focus on
    maintaining and supporting people at home
    (through use of e.g. home-care packages)
  • This is likely to improve QOL for both the
    patient and family

31
5. Optimizing QOL in dementia
  • Furthermore, increasing home supports makes
    business sense, leading to hospital avoidance
    and earlier and more appropriate discharge
  • Early detection important for initiation of
    medical treatments (Acetylcholinesterase
    inhibitors), needs and risk assessment (e.g.
    driving, living alone) and making arrangements in
    relation to will, EPOA, etc.

32
5. Optimizing QOL in dementia
  • Primary care must be strengthened, through
    Primary Care Strategy, in enabling GPs to
    diagnose and manage uncomplicated dementia,
    with support of Public Health and voluntary
    agencies
  • In dementia that is complicated because of
    medical or psychiatric problems, clear pathways
    of referral should be available from primary care
    to secondary care (i.e. Old Age Psychiatry and
    Geriatric Medicine)
  • Regional Memory Clinics should also be available
    for assessment of early dementia and unusual
    presentations

33
Assessment and management of dementia
34
5. Optimizing QOL in dementia
  • Old Age Psychiatry Consultation Liaison services
    should be developed in general hospitals (not
    acknowledged in Vision for Change), to promote
    detection of dementia and delentia,
    psychoeducation of staff and facilitate early and
    appropriate discharge and follow-up if required

35
5. Optimizing QOL in dementia
  • A minority (?25) of people with dementia reside
    in long-term care
  • Clinical management should be based on a
    biopsychosocial model

36
5.1. Optimizing QOL in inpatients with
dementiamedical/psychiatric
  • Acute and long-term wards for people with
    dementia
  • Old Age Psychiatry or Geriatric Medicine
    primarily responsible, depending on inpatient
    population characteristics, but with access to
    each other and/or primary care physicians

37
5.1. Optimizing medication
  • The most important psychotropic medications used
  • Acetylcholinesterase inhibitors (ChEIs)
  • Neuroleptics
  • Benzodiazepines
  • Antidepressants and mood stabilizers
  • Also analgesics, anticholinergic agents,
    statins, anticoagulants, etc.

38
5.1. Optimizing medication
  • ChEIs
  • Evidence that all ChEIs improve QOL, through
    improvements in global and cognitive outcome
    measures, function, behaviour and mood
  • However, not cost-effective by NHS standards
  • At what level of severity should ChEI be stopped?

39
5.1. Optimizing medication
  • Antidepressants and mood stabilizers
  • Assessment and aggressive treatment of depression
    in dementia leads to significant improvements in
    QOL, through effects on BPSD, reduced resistance
    to interventions, improved socialization
  • Detection may be difficult, esp. in more severe
    dementia

40
5.1. Optimizing medication
  • Neuroleptics
  • Neuroleptics may be useful for short-term
    management of BPSD, thus improving QOL
  • But risks and benefits should be considered, esp.
    considering recent evidence on increased risk of
    CVAEs
  • Withdrawal of neuroleptic treatment does not
    necessarily result in significant change in
    behaviour, psychiatric symptoms or QOL (Ballard
    et al, 2004)

41
5.1. Optimizing medication
  • Benzodiazepines
  • Likewise, benzodiazepines may be used in
    short-term for BPSD, but prolonged or
    inappropriate use may be associated with risk of
    oversedation, increased confusion and falls

42
5.2. Psychological treatments
  • Neuropsychiatric symptoms and QOL improved by
  • Behaviour management therapies
  • Specific types of caregiver and residential care
    staff education
  • Cognitive stimulation
  • (Livingston et al, 2005)

43
5.3. Other approaches
  • Art therapy
  • Reflexology
  • Aromatherapy
  • Drama
  • Music therapy
  • Environmental, e.g. dementia garden

44
5. Optimizing QOL in dementia medical reviews
  • Weekly dry-round and review of meds.
    (psychotropics, analgesia, etc.)
  • Weekly PRN patient reviews
  • Complete case review every 3-6 months
  • Review physical and psychological health, results
    of investigations, etc.
  • Emphasize preservation of personhood and
    promotion of QOL
  • Actively involve carers and family in case review

45
6. Summary and conclusions
  • Defining dementia
  • Defining Quality of Life (QOL)
  • Epidemiology of dementia
  • Measuring QOL in dementia
  • Optimizing QOL in dementia

46
6. Summary and conclusions
  • Defining dementia
  • ICD-10, DSM-IV, NINCDS-ADRDA, etc.
  • Diagnostic criteria may differ
  • Core features include progressive cognitive
    deterioration with functional loss

47
6. Summary and conclusions
  • 2. Defining Quality of Life
  • Different view-points patient, carer and family
  • Health Related and General QOL
  • Different aspects of health and social
    functioning taken into account
  • Different issues likely to be relevant, depending
    on the type and level of severity of dementia

48
6. Summary and conclusions
  • 3. Epidemiology of dementia
  • Population in Ireland and worldwide ageing
    rapidly
  • Life expectancy and associated risk of dementia
    rising
  • Absolute numbers of people with dementia in
    Ireland predicted to rise from 21.5k in 2001 to
    55.75k by 2036
  • Majority of people with dementia live in the
    community

49
6. Summary and conclusions
  • 4. Measuring QOL in dementia
  • Vast array of QOL measures available
  • Measures chosen depending on the type and
    severity of dementia and the clinical setting
  • Important to use at least some measure

50
Summary and conclusions
  • 5. Optimizing QOL in dementia (National planning
    level)
  • Need to develop and implement a national dementia
    strategy
  • Strengthen Primary Care
  • Establish clear pathways for assessment and
    management of dementia (primary, secondary and
    tertiary levels)

51
Summary and conclusions
  • 5. Optimizing QOL in dementia (National planning
    level)
  • Increase community and home supports for those
    diagnosed
  • Focus on hospital avoidance and early
    (appropriate) discharge strategies
  • Develop Old Age Psychiatry C/L services for
    general hospital inpatients with dementia

52
Summary and conclusions
  • 5. Optimizing QOL in dementia (inpatients)
  • Biopsychosocial approach should be adopted at
    individual clinical level
  • Regular and rigorous case reviews involving
    family and carers, and reviewing meds.,
    environment, personhood and QOL

53
References
  • A Vision for Change Report of the Expert Group
    on Mental Health Policy, 2006.
  • Ballard CG, Thomas A, Fossey T, et al. A 3-month,
    randomized, placebo-controlled, neuroleptic
    discontinuation study in 100 people with
    dementia the neuropsychiatric inventory median
    cutoff os a predictor of clinical outcome. J Clin
    Psychiatry 20465114-19.
  • Lawton MP. Quality of life in Alzheimer disease.
    Alzehimer Dis Assoc Disord. 19948 Suppl
    3138-50.
  • Livingston G, Johnston K, Katona C et al.
    Systematic Review of Psychological Approaches to
    the Management of Neuropsychiatric Symptoms of
    Dementia. Am J Psychiatry 20051621996-2021
  • OShea E. The Costs of Caring for People with
    Dementia and Related Cognitive Impairments.
    National Council on Ageing and Older People,
    2000.
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