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

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?

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

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 TasksSocialCulture

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

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

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

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,

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, 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 Alzheimer’s Caregiver (REACH) project. American Journal of Alzheimer’s Disease and other Dementias, 18,

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)

Emotional Coping Positive (n = 7) I tried to arrange my CR’s environment to safeguard him/her against causing problems I tried to divert my CR’s 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),

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 = Mean ADL = 4.16

Cognitive Status - MMSE Score Group N Haley et al., (Aug. 1994) Seminars in Speech and Language

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

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 caregiver–care recipient dyads.

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

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