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Occupational Therapy for Families Caring Occupational Therapy for Families Caring for People with Dementia:for People with Dementia:

Preliminary Effects and Relating FactorsPreliminary Effects and Relating Factors

The Catholic Foundation of Alzheimer’s Disease & Related Dementia, TAIWAN The Catholic Foundation of Alzheimer’s Disease & Related Dementia, TAIWAN S-H Tang, O-I Chio, H-C Chou, L-H Chen, H-F MaoS-H Tang, O-I Chio, H-C Chou, L-H Chen, H-F Mao

Presented by: Presented by: O-I, Grace ChioO-I, Grace Chio

The Catholic Foundation of Alzheimer’s Disease and Related Dementia

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Conflict of Interest Disclosure <CHIO> <OII>, <Master>

Has no real or apparent conflicts of interest to report.

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Introduction• Occupational therapy for client with dementia in community

–The Home Environmental Skill-building Program• ADL/IADL, BPSD, etc. [care recipients]• Caring efficacy, emotional wellbeing, etc. [caregivers]

(Gitlin, Winter, Corcoran, Dennis, Schonfeld, & Hauch, 2003; Gitlin et al., 2003; 2001)

• Application of OT home program for dementia in Taiwan–need cultural modification & evidence building

• Possible variables affect the effect of intervention–Caregiver readiness (CGR)–Clinical Dementia Rating (CDR)

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Objectives• Establish and assess the efficacy of a culturally-appropriated

OT home treatment protocol for families caring for people with dementia

• Explore the possible influence of caregiver readiness CGR and care recipient CDR stage on the treatment effect

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Participants

• Sources of case finding–Gerontopsychiatry & Neurology clinics in two hospitals in North Taiwan–Long-term care centres of Taipei City & New Taipei City

• Inclusion criteria (individuals with dementia)–Community-dwelling elder people aged 65 y/o & above–Diagnosized with dementia–Non wheelchair- or bed-ridden

• Fifty-four families caring for people with dementia–Simple randomization (lottery drawing)–Treatment group: 29 families–Control group: 25 families

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Care-recipients

Treatment gp (n=29) Control gp (n=25)Mean or no. SD or % Mean or no. SD or % p

Age 81.52 7.66 80.67 5.72 0.66Gender male 17 58.6% 13 48.0% 0.63

female 12 41.4% 12 52.0% 0.63CDR 1 8 27.6% 15 60.0% *0.02

2 18 62.1% 8 32.0% *0.03

3 3 10.3% 2 8.0% 0.77

Care-givers

Age 56.19 11.50 55.96 11.69 0.58Gender male 6 20.7% 5 20.0% 0.95

Female 23 79.3% 20 80.0% 0.95

Relationship with the care-recipientspouse 8 27.6% 9 36.0% 0.51

son/ daughter/ children-in-law 20 69.0% 16 64.0% 0.70

Other 1 3.4% 0 0.0% 0.35* p<.05

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Assessment - dependent variables

Care recipients• Cognitive function

– Mini-mental state examination (MMSE)

• Activity of daily living (ADL)–ADL questionnaire (ADLQ)

• Behavioral and Psychiatric Symptoms of Dementia (BPSD)

–Neuropsychiatric Inventory Questionnaire (NPI-Q)

• Quality of life (QOL)–Quality of Life in Alzheimer's

Disease (QOL-AD) scale

Caregivers• Caregiver burden

–Chinese Zarit Burden Interview (CZBI)

• Caregiving skill–Caregiving Skill Inventory

• Perceived adequacy of social support –Instrumental Social Support

Inventory

• Source: research assistant (blinded) assessment

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Assessment - explanatory variables

Care recipients• Clinical Dementia Rating (CDR)

–Source: medical recordCaregivers• Caregiver readiness (CGR)

–Source: occupational therapist (blinded) evaluation

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Caregiver Readiness (CGR)

• Precontemplation (CRG 1)–Loose ideas about dementia (“normal aging”, “deliberate rivalry”, etc.) –Not accepting the explanation and suggestions

• Contemplation (CRG 2)–No regard to the possibility in improvement–Suspicious attitude towards the suggestions

• Preparation (CRG 3)–Clear understanding to the effect of dementia –Readied to accept suggestions to change

• Action and Maintenance (CRG 4)–CG actively involves in or even initiate the problem-solving process.

(Gitlin & Corcoran, 2005)

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Occupational Therapy Protocol

• Highlights–Targeting at the LIFE/ LIVING of care-recipients and caregivers–Starting with the most significant challenge in everyday life–Collaboration with caregiver

• Problem-oriented approach• Discussion, implementation, reflection• Understanding, communication skills, environmental strategies, etc.

• 6-12 times home visits in 3 months • Trained occupational therapist

–4-year clinical experience, 21-hour training course

Stage

ProtocolStage 1 (Visit 1-2) Stage 2 (Visit 2-4) Stage 3 (Visit 3 onward)

GOALS

- Assess (CR & CG)- Involve the CG (collaboration relationship )

- Observe interaction- Try various communication ways with CR, highlight and demonstrate the effective ones

- Improving the effects of CG- Incorporating suggested

activities into everyday life- Involving available and

accessible familiar and social resources

- Maintain available functions- Enhance the QOL of both

CR & CG

ACTIVITIES

- Physical activity- Cognitive activity(Activity that is highly valued by CG)

Tackling with the most significant challenge with ADL/IADL (e.g. bathing, having meals, etc.)

Maintain or re-establish life rhythm & style (Management of sleep disorder, repetitive behaviors, etc.)

POINTS TO NOTE

CG clings to over-emphasized on CR’s inaccuracy and disability

Pay attention to the real concern of the CG, and encourage he/ her by pointing out the possible multiple effects of the introduced activity or strategy

Ensure that the CG is highly readied (CRG 3-4) to avoid over-stressing he/ she with the relatively lengthy process of “reformation”

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Occupational Therapy Protocol

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Experiment flow chartParticipant recruitment

Informed consent

Initial assessment [pretest]

randomization

INTERVENTIONControl gp Treatment gp

Intermediate assessment (3 months)

Final assessment [posttest] (6 months)

Data analysis (GEE)

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Data analysis• Generalized estimated equations (GEE)

–Advantages: missing date management, appropriate working corr. matrix, & robust standard error

–Structure: independent, α=.05

• Successive analyses–I. Treatment effect

•Time (each time point of pretest, intermediate assessment, posttest)•Group (treatment group is compared to control group)•Covariates: CDR level, CGR level, availability of hired worker

–II. CGR stages & treatment efficacy•Time; CGR level (CGR 3 is compared to CGR 2)

–III. CDR stages & treatment efficacy•Time; CDR level (CDR 1 is compared to CDR 2)

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Results – Care recipients

Estimated β SE Sig.

MMSE(Intercept) 29.59 4.18 *.00CDR -7.52 1.29 *.00Hired carer -2.31 1.56 .14CGR -.15 1.42 .92Time -.31 .10 *.00Treatment Group -.88 1.62 .59[Treatment] x time .19 .14 .18ADLQ (dependency %)(Intercept) 24.09 13.82 .08CDR 23.92 3.42 *.00Hired carer 15.46 3.81 *.00CGR -1.50 4.18 .72Time .73 .25 *.00Treatment Group -1.05 3.84 .78[Treatment] x time -.36 .38 .34

• Treatment (group) effect• n = 54 [treatment gp: 29]

• Comparison group: Control gp

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Estimated β SE Sig.

NPI-severity(Intercept) 7.07 2.56 *.01CDR 2.18 .82 *.01Hired carer 1.40 1.23 .26CGR -.99 .88 .26Time -.41 .15 *.01Treatment Group .36 1.33 .79[Treatment] x time .14 .19 .46NPI-distress

(Intercept) 10.39 4.13 *.01CDR 2.76 1.18 *.02Hired carer 2.94 1.83 .11CGR -2.27 1.52 .14Time -.49 .24 *.04Treatment Group .88 2.04 .67[Treatment] x time -.08 .32 .81QOL-AD

(Intercept) 37.44 4.25 *.00CDR -7.31 1.98 *.00Hired carer -1.83 2.79 .51CGR -.03 1.80 .99Time .56 .25 *.03Treatment Group 3.98 2.94 .18[Treatment] x time .18 .42 .67

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Results – Caregivers

Estimated β SE Sig.Care giver burden(Intercept) 52.72 9.97 .00CDR 4.82 3.09 .12Hired carer -3.20 3.28 .32CGR -7.84 3.52 .03Time -1.01 .42 .02Treatment Group 1.10 4.10 .79[Treatment] x time -.68 .59 .26Caregiving skill(Intercept) 34.38 3.77 *.00CDR -2.55 1.23 *.04Hired carer 3.26 1.89 .09CGR 7.92 1.58 *.00Time .48 .24 *.05Treatment Group 3.12 2.37 .19[Treatment] x time 1.10 .46 *.02* p<.05

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Results – Caregivers

Estimated β SE Sig.

Perceived adequacy of social support(Intercept) 28.08 5.28 *.00CDR -2.97 1.66 .07Hired carer 5.85 1.65 *.00CGR 5.29 1.67 *.00Time .23 .30 .45Treatment Group 1.51 2.37 .52[Treatment] x time .77 .40 *.05

* p<.05

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Discussion• OT home program as an effective treatment

–Most measures showed positive trend–BPSD severity: related to the course of disease and medication

• BPSD-related distress was relieved to a greater extend in tx group–The goals of building up collaboration with and empowering the

caregivers were achieved

• Preliminary results–Longer service duration may be needed

• follow-up & supportive intervention–Including more participants in various locations (representation)

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Results – Care recipients [CGR]

• n = 27 [treatment group]–excluding 2 participants of CGR 1–19 (CGR 2), 8 (CGR 3)

• Comparison group–CGR 2 (less readied)

Estimated β SE Sig.

MMSE(Intercept) 13.75 1.73 *.00Time -0.16 0.11 .16CGR (level 3) 1.68 2.75 .54[CGR 3] x time 0.06 0.27 .82ADLQ (dependency %)(Intercept) 72.86 3.33 *.00Time 0.46 0.39 .24CGR (level 3) -9.25 10.19 .36[CGR 3] x time -0.30 0.56 .60

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Results – Care recipients [CGR]

Estimated β SE Sig.

NPI-severity(Intercept) 8.91 1.06 *.00Time -0.25 0.15 .11CGR (level 3) 1.55 2.79 .58[CGR 3] x time -0.17 0.27 .53NPI-distress

(Intercept) 10.72 1.45 *.00Time -0.37 0.22 .10CGR (level 3) 2.99 4.55 .51[CGR 3] x time -0.32 0.49 .52QOL-AD

(Intercept) 29.01 3.41 *.00Time 0.21 0.37 .57CGR (level 3) -1.78 5.75 .76[CGR 3] x time 1.79 0.71 *.01

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Results – Caregivers [CGR]Estimated β SE Sig.

Caregiver burden(Intercept) 46.76 3.47 *.00Time -2.03 0.58 *.00CGR (level 3) -11.85 7.78 *.13[CGR 3] x time 0.90 0.83 .28Caregiving skill(Intercept) 52.42 2.51 *.00Time 1.02 0.45 *.02CGR (level 3) -1.17 3.93 .77[CGR 3] x time 2.27 0.73 *.00

Estimated β SE Sig.Perceived adequacy of social support(Intercept) 36.47 1.89 *.00Time 1.09 0.368 *.00CGR (level 3) 7.04 3.33 *.00[CGR 3] x time -0.07 0.58 .90

* p<.05

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Results – Care recipients [CDR]

• n = 28 [treatment group]–excluding 1 participant of CDR 3–7(CDR 1), 19 (CDR 2)

• Comparison group–CDR 2 (more severe)

Estimated β SE Sig.

MMSE(Intercept) 11.88 1.43 *.00Time -0.13 0.11 .25CDR (level 1) 8.93 1.64 *.00[CDR 1] x time .23 .25 .35ADLQ (dependency %)(Intercept) 74.90 3.06 *.00Time 0.32 0.33 .34CDR (level 1) -25.52 7.46 *.00[CDR 1] x time .21 0.80 .79

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Results – Care recipients [CDR]

Estimated β SE Sig.

NPI-severity(Intercept) 12.25 1.22 *.00Time -0.36 0.15 *.01CDR (level 1) -8.47 1.58 *.00[CDR 1] x time 0.57 0.17 *.00NPI-distress

(Intercept) 16.48 2.04 *.00Time -0.80 0.29 *.01CDR (level 1) -13.17 2.19 *.00[CDR 1] x time 1.20 0.34 *.00QOL-AD

(Intercept) 25.91 3.69 *.00Time 0.50 0.47 .29CDR (level 1) 7.36 4.89 .13[CDR 1] x time 0.65 0.74 .38

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Results – Caregivers [CDR]Estimated β SE Sig.

Caregiver burden(Intercept) 47.63 3.71 *.00Time -1.47 0.53 *.01CDR (level 1) -10.75 7.89 .17[CDR 1] x time -0.46 1.06 .67Caregiving skill(Intercept) 52.87 2.34 *.00Time 1.04 0.44 *.02CDR (level 1) -3.77 4.49 .40[CDR 1] x time 1.67 0.98 .09

Estimated β SE Sig.Perceived adequacy of social support(Intercept) 38.19 1.84 *.00Time 0.84 0.31 *.01CDR (level 1) 0.33 4.51 .94[CDR 1] x time 0.16 0.75 .83

* p<.05

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Discussion• CGR stage and treatment efficacy

–Caregivers with higher CGR achieved better results in all care-recipient measures and caregiving skills

–Caregiving skills• Problem preventing & solving (life-style redesign, communication,

etc.)• Beneficial to both the care-recipients and caregivers

–Effect of caregiving• “The change of quality, not quantity” –quantitative results

– e.g. Elimination of uncertainty, initiation of alertness & “sense of crisis”

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Discussion• CDR stage and treatment efficacy

–Providing effective & appropriate intervention at each CDR stage •Early dementia stage

–Alleviation of caregiving effect, improvement of skills, & introducing resources

–Maintaining care-recipient cognitive function and QOL (life-style redesign and encouraging activity participation)

•Further degeneration in function and more symptoms shown–ADL problems and BPSD are then addressed & actively solved

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Conclusion• The effectiveness of the OT home program is supported• Caregivers and care-recipients at various stages along the

course may be experiencing different challenges and needs–Further investigation into such issue may help identifying tailored

services for the families caring for people with dementia

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ReferencesGitlin, L. N., & Corcoran, M. (2005). Occupational therapy and dementia

care: the home environmental skill-building program for individuals and families. AOTA Press: Bethesda

Gitlin, L. N., Corcoran, M., Winter, L., Boyce, A., & Hauck, W. W. (2001). A Randomized, controlled trial of a home environmental Intervention: effect on efficacy and upset in caregivers and on daily Function of persons With dementia. The Gerontologist, 41(1), 4–14.

Gitlin, L. N., Hauck, W., Dennis, M. P, & Winter, L. (2005). Maintenance of effects of the home environmental skill-building program for family caregivers and individuals with Alzheimer’s Disease and related disorders. Journal of Gerontology, 60A(3), 368-374.

Zeger, S. L., Liang, K. Y., & Albert, P. S. (1988). Models for longitudinal data: a generalized estimated equation approach. Biometrics, 44, 1049-1060.

Thank you for your Thank you for your attention!attention!

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Generalized estimated equated (GEE)• Superiorities to the ordinary least squares approach

–correct for clustering in the standard errors (robust standard errors)–use all available pairs even when some data are missing–various working correlations are available for choosing to better

account for the dependency of observations• Independent, exchangeable, autoregressive, unstructured, etc.

Stage

ProtocolStage 1 (Visit 1-2)

GOALS

- Assess (CR & CG)- Involve the CG (collaboration relationship )

- Observe interaction- Try various communication ways with CR, highlight and demonstrate the effective ones

ACTIVITIES

- Physical activity- Cognitive activity(Activity that is highly valued by CG)

POINTS TO NOTE

CG clings to over-emphasized on CR’s inaccuracy and disability

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Occupational Therapy Protocol

• Mr. X (care-recipient) & Ms. X (caregiver)

–Ms. X mentioned that her husband has declined to read newspaper, one of his most favorite activities

–Therapist tried the activities with Mr. XStrategies: directing Mr. X’s attention

to photos & large simple headlines–Encourage Ms. X to try using the

strategies

Stage

ProtocolStage 2 (Visit 2-4)

GOALS

- Improving the effects of CG- Incorporating suggested

activities into everyday life- Involving available and

accessible familiar and social resources

ACTIVITIES

Tackling with the most significant challenge with ADL/IADL (e.g. bathing, having meals, etc.)

POINTS TO NOTE

Pay attention to the real concern of the CG, and encourage he/ her by pointing out the possible multiple effects of the introduced activity or strategy

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Occupational Therapy Protocol

• Acknowledge the effort of Ms. X & allow reflection

• Proceed to the next problem (ADLs)–Ms. X mentioned her husband’s

difficulties managing the steps of bathing & recognizing his own toothbrush

–Therapist discussed with Ms. XStrategies: (1) memo with pictures &

simple written instructions; (2) removal of other toothbrushes

Stage

ProtocolStage 3 (Visit 3 onward)

GOALS- Maintain available functions- Enhance the QOL of both

CR & CG

ACTIVITIES

Maintain or re-establish life rhythm & style (Management of sleep disorder, repetitive behaviors, etc.)

POINTS TO NOTE

Ensure that the CG is highly readied (CRG 3-4) to avoid over-stressing he/ she with the relatively lengthy process of “reformation”

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Occupational Therapy Protocol

• Identifying the value of simple instruction & environment arrangement

• Minimizing the impact of forgetfulness & other symptoms restoring greatest life control

–Put everything need to bring with when going out into one single bag

–Cabinet with less drawers–Simple memo & day schedule