Caregiver Strategy Use to Contend with Cognitive and Functional Decline in Persons with Dementia

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Caregiver Strategy Use to Contend with Cognitive
and Functional Decline in Persons with Dementia

• Laura N. Gitlin, Marie P.Dennis, Walter W. Hauck,
  Laraine Winter, Sandy Schinfeld
• Community and Homecare Research Division,
• Thomas Jefferson University, Philadelphia, PA
• Funded by NIA U01 AG 013265

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Research Questions

• What strategies do caregivers use to contend with
  cognitive decline and ADL dependence of persons
  with dementia?
• Does caregiver use of environmental strategies
  (physical, task, social and emotional) differ for
  persons at different cognitive and dependence
  levels?

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Study Rationale

• With disease progression, family caregiver
  involvement in day-to-day care increases
• Caregivers at increased risk of social isolation
  and emotional strain
• Little known about specific strategies
  caregivers use with disease progression
• Role of physical and social environment in
  providing care is unclear

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Framework for Understanding Home Environment and
Strategy Use

• Environment as 4 interrelated concentric
  circles/layers
• (Barris et al, 1985)
• Environmental hierarchy which influences
  decisions about interactions and performance
  outcomes

objects
Tasks
Social
Culture
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Environmental Layers

• Core objects (materials/artifacts of daily
  life)
• Tasks activities of play, work, self-care which
  determine use of objects
• Social groups/organizations delineate roles,
  relationships between roles and essential tasks
• Culture beliefs that tie together and govern
  action of persons Emotional climate
• Barris, Kielhofner, Levine Neville
  (1985). Occupation as Interaction with the
  Environment, in A Model of Human Occupation, Ed.
  Kielhofner and Burke, p. 42-62.

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Properties of Environmental Layers

• Each layer has special attributes that contribute
  to the system of p-e interactions
• Arousal
• Press
• Matching interests and values
• Matching competencies

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Modification of Environmental Layers in Dementia
Care

• Care Recipient
• Decrease disorientation/way finding in CR
• Support functionality of CR
• Increase activity engagement in CR
• Increase safety
• Minimize behavioral disturbances of CR
• Caregiver
• Enhance self-efficacy
• Decrease constant vigilance/hands-on assistance
• Decrease daily stress

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Physical (Object Layer) Environment

• Sum of of adaptations throughout home (42
  possible modifications)
• - Assistive devices (grab bars, stair glide,
  commode, transfer boards)
• - Structural modifications
• - Removal of furniture
• - Rearrangement of furniture
• Average Clutter in 5 Rooms of Home (scores range
  from 5 to 20)
• 1 very cluttered
• 2 somewhat cluttered
• 3 no clutter
• Gitlin, L. N., Schinfeld, S., Winter, L.,
  Corcoran, M., Hauck, W. (2002). Evaluating
  home environments of person with dementia
  Interrater reliability and validity of the home
  environmental assessment protocol (HEAP).
  Disability and Rehabilitation, 24, 59-71.

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Task Environment

• Task simplification strategies
• 19 item Task Management Strategy Index
• Use of strategies (1 never to 5 always)
• - Use short instructions
• - Place items out in order of use
• - Introduce activity that uses same motion
• Task Oversight - Vigilance
• Time on duty (hours)
• Time doing things (hours)
• Gitlin, L. N. Winter, L., Dennis, M., Corcoran,
  M, Schinfeld, S., Hauck, W. (2002). Strategies
  used by families to simplify tasks for
  individuals with Alzheimer's disease and related
  disorders Psychometric analysis of the task
  management strategy index (TMSI). The
  Gerontologist, 42, 61-69
• Mahoney, D. F., Jones, R. N., Coon, D.,
  Mendelsohn, A. B., Gitlin, L. N., Ory, M.
  (2003). "The Caregiver Vigilance Scale
  Application and validation in the Resources for
  Enhancing Alzheimers Caregiver (REACH) project.
  American Journal of Alzheimers Disease and other
  Dementias, 18, 39-48.

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Social Environment

• Instrumental Assistance
• - days family/friends help with CR ADLS
• - formal services used (up to 21)
• Emotional Social Support
• - Social network
• - Social support (people to confide to)

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Emotional Coping

• Positive (n 7)
• I tried to arrange my CRs environment to
  safeguard him/her against causing problems
• I tried to divert my CRs attention when he/she
  began to feel upset
• Negative (n 5)
• I criticized or scolded CR to try to prompt
  better behavior with him/her
• I threatened CR with undesirable consequences if
  he/she did not cooperate
• I yelled at CR
• Response format is a 5-point Likert scale with
  measurements ranging from 1 (never) to 5 (always)
  
• Hinrichsen, G. A., Niederehe, G. (1994).
  Dementia management strategies and adjustments of
  family members of older patients. The
  Gerontologist 34 (1), 95-102.

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Philadelphia REACH Site Sample (N
255)

• 75 Female
• 48 White
• 48 African American
• 61 Non-spouses
• Mean CG Age 61
• Average of 4 years caregiving
• Mean Education 12 years
• CR MMSE 12.28
• Mean ADL 4.16

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Cognitive Status - MMSE

• Score Group N
• 21 35
• 17-20 43
• 11-16 78
• 1-10 89
• 0 10
• Haley et al., (Aug. 1994) Seminars in Speech and
  Language

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Summary Cognitive Decline

• Decluttering (p .008), task simplification (p
  .001), and doing things for CR (p .028) used
  more with low MMSE groups.
• No statistically significant differences among
  MMSE groups as to
• Social assistance (informal or formal help
  received)
• Social coping (Social network or social support)
• of Adaptations to physical environment
• Use of emotional coping (positive and negative
  strategies)
• Kruskal Wallis Test

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ADL FUNCTIONAL DEPENDENCE

• Score Group N
• Independent 60
• Supervision 50
• A little physical help 36
• Moderate physical help 26
• Totally physically dependent 83
• Gitlin, L. N., Roth, D., Burgio, L., Loewenstein,
  D. A., Winter, L. Nichols, L., Argüelles, S.,
  Corcoran, M., Burns, R., Martindale, J. (under
  review). Assessment of dependence in individuals
  with Alzheimer's disease and dependence-associated
  burden Psychometric evaluation of a new measure
  for use with caregivercare recipient dyads.

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Summary ADL Dependence

• Physical Environment
• Adaptations (p .000) and decluttering (p .000)
  greater among high dependence groups
• Task Environment
• Task simplification (p .000), time on duty (p
  .008), and doing things (p .000) greater in
  high dependence groups
• Social Environment (Assistance and Coping)
• No statistically significant difference among
  dependence groups as to use of formal and
  informal social resources
• No difference among dependence groups as to
  emotional support received
• Emotional Environment
• More positive strategies used in high dependence
  groups (p .002)
• No difference among dependence groups as to use
  of negative strategies

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Implications

• Physical and task environment are modified with
  disease progression
• Social environment remains relatively stable
  across MMSE and dependence groups
• Caregivers do not adjust social environment with
  disease progression
• CG may benefit from interventions that help
  strengthen instrumental and emotional social
  environment
• Caregivers increase positive emotional coping
  responses but may need help eliminating
  ineffective (negative) strategies