Title: Quality of Life in Dementia: the medical perspective
1Quality 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
2Outline
- Defining dementia
- Defining Quality of Life (QOL)
- Epidemiology of dementia
- Measuring QOL in dementia
- Optimizing QOL in dementia
- Summary and conclusions
3Historical
- 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
41. Defining dementia
- Alzheimers the prototypical and commonest
dementia - Memory and other cognitive domains affected
- Gradual and progressive course
- Functional impairment
- Clear consciousness
51. 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
61. 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
72. 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
8The 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
92. 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
102. 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
112. 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
123. 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)
133. 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)
143. 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
153. 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
163. 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
17M. 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
182. 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
194. 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
204. 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
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234. 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.
24Old 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
255. 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
265. 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
275. 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?
285. 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
295. 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
305. 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
315. 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.
325. 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
33Assessment and management of dementia
345. 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
355. 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
365.1. 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
375.1. Optimizing medication
- The most important psychotropic medications used
- Acetylcholinesterase inhibitors (ChEIs)
- Neuroleptics
- Benzodiazepines
- Antidepressants and mood stabilizers
- Also analgesics, anticholinergic agents,
statins, anticoagulants, etc.
385.1. 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?
395.1. 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
405.1. 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)
415.1. 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
425.2. 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)
435.3. Other approaches
- Art therapy
- Reflexology
- Aromatherapy
- Drama
- Music therapy
- Environmental, e.g. dementia garden
445. 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
456. Summary and conclusions
- Defining dementia
- Defining Quality of Life (QOL)
- Epidemiology of dementia
- Measuring QOL in dementia
- Optimizing QOL in dementia
466. 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
476. 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
486. 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
496. 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
50Summary 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)
51Summary 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
52Summary 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
53References
- 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.