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
(No Transcript)
22
(No Transcript)
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.