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1 Occupational Therapy for Families Caring for People with Dementia: Preliminary Effects and Relating Factors The Catholic Foundation of Alzheimer’s Disease.

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Presentation on theme: "1 Occupational Therapy for Families Caring for People with Dementia: Preliminary Effects and Relating Factors The Catholic Foundation of Alzheimer’s Disease."— Presentation transcript:

1 1 Occupational Therapy for Families Caring for People with Dementia: Preliminary Effects and Relating Factors The Catholic Foundation of Alzheimer’s Disease & Related Dementia, TAIWAN S-H Tang, O-I Chio, H-C Chou, L-H Chen, H-F Mao Presented by: O-I, Grace Chio The Catholic Foundation of Alzheimer’s Disease and Related Dementia

2 2 Conflict of Interest Disclosure, Has no real or apparent conflicts of interest to report.

3 3 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)

4 4 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

5 5 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

6 6 Care-recipients Treatment gp (n=29)Control gp (n=25) Mean or no.SD or %Mean or no.SD or % p Age81.527.6680.675.720.66 Gender male 1758.6%1348.0%0.63 female 1241.4%1252.0%0.63 CDR 1 827.6%1560.0%*0.02 2 1862.1%832.0%*0.03 3 310.3%28.0%0.77 Care-givers Age56.1911.5055.9611.690.58 Gender male 620.7%520.0%0.95 Female 2379.3%2080.0%0.95 Relationship with the care-recipient spouse 827.6%936.0%0.51 son/ daughter/ children-in-law 2069.0%1664.0%0.70 Other 13.4%00.0%0.35 * p <.05

7 7 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

8 8 Assessment - explanatory variables Care recipients Clinical Dementia Rating (CDR) – Source: medical record Caregivers Caregiver readiness (CGR)CGR – Source: occupational therapist (blinded) evaluation

9 9 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)

10 10 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

11 Stage Protocol Stage 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” 11 Occupational Therapy Protocol

12 12 Experiment flow chart Participant recruitment  Informed consent  Initial assessment [pretest]  randomization  INTERVENTION Control gpTreatment gp    Intermediate assessment (3 months)   Final assessment [posttest] (6 months)  Data analysis (GEE)

13 13 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)

14 14 Results – Care recipients Estimated βSESig. MMSE (Intercept)29.594.18*.00 CDR-7.521.29*.00 Hired carer-2.311.56.14 CGR-.151.42.92 Time-.31.10*.00 Treatment Group-.881.62.59 [Treatment] x time.19.14.18 ADLQ (dependency %) (Intercept)24.0913.82.08 CDR23.923.42*.00 Hired carer15.463.81*.00 CGR-1.504.18.72 Time.73.25*.00 Treatment Group-1.053.84.78 [Treatment] x time-.36.38.34 Treatment (group) effect n = 54 [treatment gp: 29] Comparison group: Control gp

15 15 Estimated βSESig. NPI-severity (Intercept)7.072.56*.01 CDR2.18.82*.01 Hired carer1.401.23.26 CGR-.99.88.26 Time-.41.15*.01 Treatment Group.361.33.79 [Treatment] x time.14.19.46 NPI-distress (Intercept) 10.394.13*.01 CDR 2.761.18*.02 Hired carer 2.941.83.11 CGR -2.271.52.14 Time -.49.24*.04 Treatment Group.882.04.67 [Treatment] x time -.08.32.81 QOL-AD (Intercept) 37.444.25*.00 CDR -7.311.98*.00 Hired carer -1.832.79.51 CGR -.031.80.99 Time.56.25*.03 Treatment Group 3.982.94.18 [Treatment] x time.18.42.67

16 16 Results – Caregivers Estimated βSESig. Care giver burden (Intercept)52.729.97.00 CDR4.823.09.12 Hired carer-3.203.28.32 CGR-7.843.52.03 Time-1.01.42.02 Treatment Group1.104.10.79 [Treatment] x time-.68.59.26 Caregiving skill (Intercept)34.383.77*.00 CDR-2.551.23*.04 Hired carer3.261.89.09 CGR7.921.58*.00 Time.48.24*.05 Treatment Group3.122.37.19 [Treatment] x time1.10.46*.02 * p<.05

17 17 Results – Caregivers Estimated βSESig. Perceived adequacy of social support (Intercept)28.085.28*.00 CDR-2.971.66.07 Hired carer5.851.65*.00 CGR5.291.67*.00 Time.23.30.45 Treatment Group1.512.37.52 [Treatment] x time.77.40*.05 * p<.05

18 18 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)

19 19 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 βSESig. MMSE (Intercept)13.751.73*.00 Time-0.160.11.16 CGR (level 3)1.682.75.54 [CGR 3] x time0.060.27.82 ADLQ (dependency %) (Intercept)72.863.33*.00 Time0.460.39.24 CGR (level 3)-9.2510.19.36 [CGR 3] x time-0.300.56.60

20 20 Results – Care recipients [CGR] Estimated βSESig. NPI-severity (Intercept)8.911.06*.00 Time-0.250.15.11 CGR (level 3)1.552.79.58 [CGR 3] x time-0.170.27.53 NPI-distress (Intercept) 10.721.45*.00 Time -0.370.22.10 CGR (level 3) 2.994.55.51 [CGR 3] x time -0.320.49.52 QOL-AD (Intercept) 29.013.41*.00 Time 0.210.37.57 CGR (level 3) -1.785.75.76 [CGR 3] x time 1.790.71*.01

21 21 Results – Caregivers [CGR] Estimated βSESig. Caregiver burden (Intercept)46.763.47*.00 Time-2.030.58*.00 CGR (level 3)-11.857.78*.13 [CGR 3] x time0.900.83.28 Caregiving skill (Intercept)52.422.51*.00 Time1.020.45*.02 CGR (level 3)-1.173.93.77 [CGR 3] x time2.270.73*.00 Estimated βSESig. Perceived adequacy of social support (Intercept)36.471.89*.00 Time1.090.368*.00 CGR (level 3) 7.043.33*.00 [CGR 3] x time -0.070.58.90 * p<.05

22 22 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 βSESig. MMSE (Intercept)11.881.43*.00 Time-0.130.11.25 CDR (level 1)8.931.64*.00 [CDR 1] x time.23.25.35 ADLQ (dependency %) (Intercept)74.903.06*.00 Time0.320.33.34 CDR (level 1)-25.527.46*.00 [CDR 1] x time.210.80.79

23 23 Results – Care recipients [CDR] Estimated βSESig. NPI-severity (Intercept)12.251.22*.00 Time-0.360.15*.01 CDR (level 1)-8.471.58*.00 [CDR 1] x time0.570.17*.00 NPI-distress (Intercept) 16.482.04*.00 Time -0.800.29*.01 CDR (level 1) -13.172.19*.00 [CDR 1] x time 1.200.34*.00 QOL-AD (Intercept) 25.913.69*.00 Time 0.500.47.29 CDR (level 1) 7.364.89.13 [CDR 1] x time 0.650.74.38

24 24 Results – Caregivers [CDR] Estimated βSESig. Caregiver burden (Intercept)47.633.71*.00 Time-1.470.53*.01 CDR (level 1)-10.757.89.17 [CDR 1] x time-0.461.06.67 Caregiving skill (Intercept)52.872.34*.00 Time1.040.44*.02 CDR (level 1)-3.774.49.40 [CDR 1] x time1.670.98.09 Estimated βSESig. Perceived adequacy of social support (Intercept)38.191.84*.00 Time0.840.31*.01 CDR (level 1) 0.334.51.94 [CDR 1] x time 0.160.75.83 * p<.05

25 25 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”

26 26 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

27 27 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

28 28 References Gitlin, 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.

29 Thank you for your attention!

30 30 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.

31 Stage Protocol Stage 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 31 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. X Strategies: directing Mr. X’s attention to photos & large simple headlines – Encourage Ms. X to try using the strategies

32 Stage Protocol Stage 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 32 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. X Strategies: (1) memo with pictures & simple written instructions; (2) removal of other toothbrushes

33 Stage Protocol Stage 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” 33 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


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