Quality of life for people with dementia: how important are psychosocial interventions

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Quality of life for people with dementia how
important are psychosocial interventions?

• Bob Woods
• Professor of Clinical Psychology of Older People
• Bangor University
• b.woods_at_bangor.ac.uk

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Quality of life for people with dementia

• The National Dementia Strategy aims to improve
  QoL for people with dementia and their carers
• There is a vast amount that can be done to
  improve and maintain QoL in dementia
• No specific mention of psychosocial interventions
• Non-pharmacological interventions referred to for
  behaviour problems in care homes

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Psychosocial interventions - 1

• Cognitive-focused
• Cognitive stimulation
• Cognitive training
• Cognitive rehabilitation
• Reminiscence
• Emotion-focused
• Validation
• Psychotherapy / counselling / CBT
• Reminiscence
• Behaviour-focused
• Skill training
• Functional analysis for challenging behaviour

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Psychosocial interventions - 2

• Stimulation-focused
• Multi-sensory stimulation
• Music / art / animals
• Exercise
• Caregiver-focused
• Psychoeducation
• Multi-component programmes
• CBT for distress
• Staff- and system-focused
• Staff training
• Changing culture and environment of care
• Timely diagnosis pre- and post-diagnostic
  counselling

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NICE-SCIE guidance on the management of the
dementias (2006) www.nice.org.uk

• People with mild/moderate dementia of all types
  should be given the opportunity to participate in
  a structured group cognitive stimulation
  programme provided by workers with training and
  supervision irrespective of any anti-dementia
  drug received

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NICE-SCIE For people with dementia who develop
behaviour that challenges

• Assessment should include
• Physical health, pain, discomfort
• Effects of medication
• Biography
• Psychosocial factors, depression
• Environmental factors
• Specific behavioural and functional analysis
• To produce individually tailored care plan

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NICE-SCIE For people with dementia who have
co-morbid agitation

• Access to a range of interventions, tailored to
  the individuals preferences, skills and
  abilities. Monitor response so care plan can be
  adapted. Range of approaches may include
• Aromatherapy
• Multi-sensory stimulation
• Therapeutic use of music or dancing
• Animal-assisted therapy
• Massage

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NICE-SCIE For people with dementia who also have
depression and/or anxiety

• Cognitive behavioural therapy should be offered
  as part of the treatment approachmay involve
  active participation of their carers
• A range of tailored interventions should be
  available, which may include
• Multi-sensory stimulation
• Animal-assisted therapy
• Exercise
• Reminiscence therapy

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NICE-SCIE For carers of people with dementia

• A range of multi-component tailored interventions
  should be available, including
• Psychoeducation
• Peer support groups
• Support and information telephone / internet
• Structured training courses
• Family meetings
• Psychological therapy (including CBT) where
  distress and negative psychological impact

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What effect do psychosocial interventions have on
the quality of life of people with dementia?

• Systematic reviews of the evidence suggest that
  there is little robust evidence that any of these
  interventions have an impact on the quality of
  life of people with dementia
• Two exceptions
• Cognitive stimulation therapy (Spector et al
  2003) 14 1-hour group sessions over 7 weeks
• Community Occupational Therapy (Graff et al
  2007) 10 1-hour sessions over 5 weeks joint
  with caregiver

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Community OT interventionGraff et al (2007)

• 4 sessions diagnostics and goal definition
• Choose and improve meaningful activities
• Environmental modifications
• Compensatory and environmental strategies
• 6 sessions
• Optimise strategies to improve ADLs
• Train caregiver to use effective supervision,
  problem solving, coping strategies maintain
  autonomy and social participation

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What do we mean by quality of life in dementia?
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Measuring quality of life for people with
dementia?

• The potential for self-report
• Reliable
• Valid
• May differ from caregiver perspective
• Self-report measures
• DQOL (Brod et al, 1999)
• QOL-AD (Logsdon et al, 1999)
• DEMQOL (Smith, Banerjee et al 2006)
• Limitation of pre-defined domains
• Proxy and observational measures useful in severe
  dementia

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QoL and dementia

• QOL-AD (Logsdon et al, 1999)
• Simple self-report measure of QoL
• 13 items, 4 point scale
• E.g. Energy Fun Money Physical health
  Friends Family etc.
• Completed in interview with person
• Domains validated from focus groups (people with
  dementia carers) questionnaires
  (professionals)

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What does predict quality of life in people with
dementia?

• Smith et al 2006 (DEMQOL-Proxy) n99
• Behavioural and psychological symptoms (NPI)
  agitation, depression, anxiety, disinhibition,
  and irritability
• Younger age
• Mental health of carer (univariate only)
• Hoe et al (2005) QOL-AD (combined) severe
  dementia MMSE 3-12, n41
• The persons self-care skills
• fewer physical health limitations
• positive mood status
• low levels of apathy

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What does predict quality of life in people with
dementia? (2)

• Hoe et al (2006) QOL-AD care home n119
• Self-report QoL relates to depression (r-0.53,
  Plt0.0001) and anxiety (r-0.50, Plt0.001).
• Staff report QoL relates to dependency (r-0.53,
  Plt0.001) and behaviour problems (r-0.40,
  Plt0.001).

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What does predict quality of life in people with
dementia? (3)

• Thorgrimsen et al (2003) Self-reported QoL-AD
  residential homes / day centres (MMSE 14.4 sd
  3.8) n201
• QOL-AD not correlated with memory and cognition
  measures such as ADAS-Cog or MMSE
• Higher in those with moderate dementia than in
  those with mild dementia on clinical dementia
  rating
• Relates to depression, not cognition
• Woods et al 2009 community sample, n77
• Self-rated quality of relationship warmth with
  caregiver predicts QoL (stronger effect than
  depression)

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What does predict quality of life in people with
dementia? (4)

• Zimmerman et al (2005) 45 USA care facilities 421
  residents 6 month period
• Change in quality of life (QOL-AD) were greater
  in facilities that
• used a specialized worker approach
• trained more staff in more domains central to
  dementia care
• encouraged activity participation
• Residents perceived their quality of life as
  better when
• staff were more involved in care planning
• staff attitudes were more hopeful
• when there was less use of anti-psychotic and
  sedative medication

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How can QoL of people with dementia be improved?

• Improve mood
• E.g. Pleasurable activities, CBT for depression
• Help staff to have more hopeful attitudes
  (Spector Orrell, 2006 Lintern Woods, 2000)
• Enhance relationship with caregiver
• Reduce use of anti-psychotic medication (Fossey
  et al, 2006)
• May also require work on reducing behaviour that
  challenges major issue for caregivers

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Cognitive function and QoL

• Clear finding that cognitive function is not
  related to self-reported QoL in people with
  dementia
• So why try to enhance cognition?
• In Spector et als 2003 study of CST, changes in
  cognition AND QoL were found
• ? Cognitive changes related to cognitive content
  and QoL changes relate to social aspect?
• NO QoL changes mediated by cognitive change
  i.e. didnt get changes in QoL without changes in
  cognition (Woods et al, 2006)
• But cognitive change not a sufficient end in
  itself

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Finally

• There is a great deal that can be done to improve
  QoL in people with dementia
• This is not just about delivering therapies,
  but depends on establishing care systems, where
  there are individually-tailored opportunities for
  activity, engagement, interaction, growth and
  development
• A range of psychosocial interventions should be
  available one size will not fit all personal
  preferences, pattern of abilities
• Plenty of scope (and need) for development of new
  approaches and modalities evidence-based
  approach must not be used to stifle creativity