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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 Age Gender male %1348.0%0.63 female %1252.0%0.63 CDR %1560.0%* %832.0%* %28.0%0.77 Care-givers Age Gender male 620.7%520.0%0.95 Female %2080.0%0.95 Relationship with the care-recipient spouse 827.6%936.0%0.51 son/ daughter/ children-in-law %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 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) *.00 CDR *.00 Hired carer CGR Time *.00 Treatment Group [Treatment] x time ADLQ (dependency %) (Intercept) CDR *.00 Hired carer *.00 CGR Time.73.25*.00 Treatment Group [Treatment] x time Treatment (group) effect n = 54 [treatment gp: 29] Comparison group: Control gp

15 15 Estimated βSESig. NPI-severity (Intercept) *.01 CDR *.01 Hired carer CGR Time *.01 Treatment Group [Treatment] x time NPI-distress (Intercept) *.01 CDR *.02 Hired carer CGR Time *.04 Treatment Group [Treatment] x time QOL-AD (Intercept) *.00 CDR *.00 Hired carer CGR Time.56.25*.03 Treatment Group [Treatment] x time

16 16 Results – Caregivers Estimated βSESig. Care giver burden (Intercept) CDR Hired carer CGR Time Treatment Group [Treatment] x time Caregiving skill (Intercept) *.00 CDR *.04 Hired carer CGR *.00 Time.48.24*.05 Treatment Group [Treatment] x time *.02 * p<.05

17 17 Results – Caregivers Estimated βSESig. Perceived adequacy of social support (Intercept) *.00 CDR Hired carer *.00 CGR *.00 Time Treatment Group [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) *.00 Time CGR (level 3) [CGR 3] x time ADLQ (dependency %) (Intercept) *.00 Time CGR (level 3) [CGR 3] x time

20 20 Results – Care recipients [CGR] Estimated βSESig. NPI-severity (Intercept) *.00 Time CGR (level 3) [CGR 3] x time NPI-distress (Intercept) *.00 Time CGR (level 3) [CGR 3] x time QOL-AD (Intercept) *.00 Time CGR (level 3) [CGR 3] x time *.01

21 21 Results – Caregivers [CGR] Estimated βSESig. Caregiver burden (Intercept) *.00 Time *.00 CGR (level 3) *.13 [CGR 3] x time Caregiving skill (Intercept) *.00 Time *.02 CGR (level 3) [CGR 3] x time *.00 Estimated βSESig. Perceived adequacy of social support (Intercept) *.00 Time *.00 CGR (level 3) *.00 [CGR 3] x time * 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) *.00 Time CDR (level 1) *.00 [CDR 1] x time ADLQ (dependency %) (Intercept) *.00 Time CDR (level 1) *.00 [CDR 1] x time

23 23 Results – Care recipients [CDR] Estimated βSESig. NPI-severity (Intercept) *.00 Time *.01 CDR (level 1) *.00 [CDR 1] x time *.00 NPI-distress (Intercept) *.00 Time *.01 CDR (level 1) *.00 [CDR 1] x time *.00 QOL-AD (Intercept) *.00 Time CDR (level 1) [CDR 1] x time

24 24 Results – Caregivers [CDR] Estimated βSESig. Caregiver burden (Intercept) *.00 Time *.01 CDR (level 1) [CDR 1] x time Caregiving skill (Intercept) *.00 Time *.02 CDR (level 1) [CDR 1] x time Estimated βSESig. Perceived adequacy of social support (Intercept) *.00 Time *.01 CDR (level 1) [CDR 1] x time * 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), Zeger, S. L., Liang, K. Y., & Albert, P. S. (1988). Models for longitudinal data: a generalized estimated equation approach. Biometrics, 44,

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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