Department of Psychiatry, The University of Melbourne

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1 Azlina Wati Nikmat 1,2 Graeme Hawthorne 1, Sam Korn 1 1 Department of Psychiatry, The University of Melbourne 2 Department of Psychiatry, University Teknologi MARA

2 Worldwide: Predicted 2 billion people over the age of 60 in 2050 (WHO, 2006) Malaysia It is predicted that older adults will increase from : 1,032,300 people (5.9%) in 1991 to 3,439,600 people (9.9%) by the year 2020 (PALA, J. 2005)

3 Source: Jorm et al (1987)

4 Disabling condition Low and middle income countries High income countries World 0-59 Years 60 years and over 0-59 Years 60 years and over All age Hearing loss Glaucoma Alzheimer and other dementias Cerebrovascular Disease Rheumatoid arthritis * WHO THE GLOBAL BURDEN OF DISEASE 2004 UPDATE, 2008

5 Home care has become the preferred option among the elderly and their caregivers (Iwarsson et. al, 2007; Suh et. al, 2005) Care giving - source of burden and distress for the family caregiver (Burns & Rabins, 2000; Chene, 2006) Nursing home often becomes an option when the caregivers are no longer able to cope with the disease (Moyle et. al, 2007; Rigaud et. al, 2003) Various studies on dementia patients in nursing homes - it is remains unclear to whether placement of dementia patient in nursing home will make a difference in their QOL (Moyle et al., 2007).

6 Literature review I: search A comprehensive search in the electronic databases of CINAHL, MEDLINE, Science Direct and PsychINFO from November 2009 to March 2010 Keywords : quality of life, health related quality of life, dementia, nursing homes, home nursing, residential care and home care Other keywords : living arrangement, cognitive impairment, physical impairment, depression, social isolation and needs.

7 Literature review II: N. papers Keyword CINAHL PsycINFO Medline Dementia Quality of life Dementia AND Quality of life Dementia AND Quality of life AND Nursing home/home care 29 related papers; 24 shared papers and 5 unique papers related papers; 5 shared papers and 7 unique papers

8 Literature review III: outcomes Quality of life of the caregiver eg: Alonso et. al, 2004; Bruce, 2005; Kurz, 2003;Thomas et. al, 2006, te Boekhorst et. al, 2008 Measuring quality of life Context of measures eg: Etema et. al, 2005; Inouye et. al, 2009; Smith et. al, 2005; Wolak et. al, 2009 Reliability of measurement eg: Gerritsen et. al, 2007; Kavirajan et. al, 2009; Thorgrimsen et. al, 2003; Trigg et. al, 2007; Logsdon et. al, 2002; Wolak et. al, 2009

9 Literature review III: outcomes (cont.) Proxy versus self report eg: Arlt et. al, 2008; Huang et. al, 2009; Moyle et. al, 2007; Ready et. al 2004) Factors associated with quality of life Living arrangement eg: Hoe et. al, 2006; te Boekhorst et. al, 2008 Cognitive decline eg: Missotten et. al, 2008 Health functions eg: Murray & Boyd, 2009 Pharmacotherapy in dementia eg: Ward et. al., 2008; Hughes & Medina-Walpole, 2000; Kirby et. al, 2006

10 Literature review IV: conclusions Lack of study comparing the QoL of dementia patients in nursing home and home care Various instruments used in assessing QoL Different construct eg: Anderson et. al, 1999; Farquhar, 1995; Grewal et. al, 2006; Brown et. al. 2004; WHOQoL group, 1998 Generic vs Specific eg: Pettit et. al, 2001; Power et. al, 2005; Selai & Trimble, 1999; Smith et. al, 2005 Self report vs proxy report eg: Brod et. al, 1999; Thorgrimsen et. al, 2003; Ready et. al, 2002; Logsdon, 1999; Magaziner, 1997; Rabins et. al, 1999; Selai, 2001)

11 The study protocol Aims: Methodology To identify and compare the quality of life of dementia patients in nursing home and those in community (cared by family members)

12 To provide a profile of dementia patients in the nursing home and home care To compare the QoL of dementia patients in the nursing home and home care To identify factors that differentiate the QoL of dementia patients in these two settings (if any exists)

13 Provide a better life for the demented patients (understanding their needs - proper management plan can be addressed to reduce the burden of the caregivers and provide a better life for the demented patient). Provide information about health care in dementia to Government, clinicians and managers regarding the preferred options for support of older adults with dementia.

14 Mental health/ psychological Social relationship QoL Physical functions/ activities Environmental

15 Research design : Quasi experimental design - cross sectional study Sampling population - Nursing homes (dementia patients residing in government nursing homes) - Rumah Ehsan and Rumah Sri Kenangan - Home care (dementia patients who live with a carer and get services from the memory clinic in government hospitals) - Hospital Selayang, Hospital Kuala Lumpur and Hospital Sungai Buloh

16 Review medical record for inclusion and exclusion criteria and exclusion criteria Meet criteria Does not meet criteria Consent form and provide participant information sheet Consent Non-consent Exit Administer SMMSE SMMSE score 11 SMMSE score <11 Administration of other assessments

17 Inclusion criteria Exclusion criteria - Consented respondents age years old - Sufficient command of the Malay or English language (able to complete a questionnaire or interview) - Score <11 in the Short Mini Mental State Examination (SMMSE) - No use of antipsychotic medications - Respondents aged less than 60 or more than 90 years old - Cannot speak or poor understanding of Malay or English language - Score 11 in the Short Mini Mental State Examination (SMMSE) - Physically challenged patients (eg; blind, stroke) - Psychosis

18 Measurements Measurements : Socio-demographic information, WHO-8, AQoL-8, FS, CSDD, CANE-S, Barthel Index An average of minutes to administer the questionnaires

19 Nursing Homes: Mean = 21.22, SD = 4.64 Home Care: Mean = 23.29, SD = 4.56 n ( sd 2 n sd 2 ne )( Z 2 e ne Z 1 ) 2 Assumes: Test size = 0.05 (α) Zα = 1.96; Power = 0.80 (1-β), Z 1-β = 0.84 Calculated n = 105 in each study group. Source of reference: DAVIDSON AG, FAYERS PM, NUNN AJ, VENABLES KM & TAYLOR AJ. (1986). Number of patients required in lung function studies. Thorax. 41 (11): POWER et al (2005). Development of the WHOQOL-OLD module. Quality of Life Research. 14 (10): Based on re-analysis of the Melbourne WHOQOL-OLD study data, N = 758 cases.

20 Stratified sampling procedure Location/ Nursing homes Home care TOTAL Gender Cognitive severity Cognitive severity Mild a Moderate b Mild a Moderate b Male Female TOTAL Cognitive severity measured by SMMSE a = SMMSE 6-10 b = SMMSE 0-5 Source of reference: POWER et al (2005). Development of the WHOQOL-OLD module. Quality of Life Research. 14 (10): Based on re-analysis of the Melbourne WHOQOL-OLD study data, N = 758 cases.

21 The preliminary findings 31 dementia patients from nursing homes and 82 from home care were invited 62 agreed to participate 49 (30: NH, 19: HC) met the study entry criteria and completed the questionnaire -participation rate of 44%.

22 Demographic results Ethnicity Mean age : 70.4 (7.44) Female : 55.1 % 10% Education : Primary school (46.9 % ) High school (28.6 %) Financial status : 27% 63% Malay Chinese Indian Average (36.7 %) Slightly below average (51 %) Relationship satisfaction : Marital status Very satisfied 8.2 % Satisfied 28.6 % 45% 12% Single Married Neither 10.2 % 31% Separated Dissatisfied 10.2 % Very dissatisfied 65.3 % 12% Widowed

23 Health results Self reported health : Healthy (65.3%) On medication : 83.7% Psychiatry meds : 38.8% No. of comorbidities 2% 29% 69% 0 to 3 4 to 7 more than 7

24 Uni-variate analysis Logistic regression Table 1: Demographic profiles of dementia patients in home care and nursing homes Study cohort Statistics Home care Nursing home Relationship satisfaction with children N (%) N (%) Satisfied 14 (82.40) 4 (26.70) Neither 2 (11.80) 2 (13.30) Dissatisfied 1 (5.90) 9 (60.0) Fisher Exact =12.06, p =0.01 Financial status Average 15 (78.90) 4 (13.30) Below average 4 (21.10) 26 (86.70) χ 2 =21.10, df=1, p<0.01

25 Table 2: Health status of participants by study cohort Study cohort Home care Nursing home Statistics (a) Months since Mean (SD) (32.0) (15.94) t=0.65, df=21, p=0.52 diagnosis Health condition Not healthy 5 (26.30) 12 (40.00) Healthy 14 (73.70) 18 (60.00) χ 2 =0.96, df=1, p=0.33 Co-morbidities Mean (SD) 2.95 (1.68) 2.77 (1.99) t=0.33, df =47, p=0.75 Medication used No 3 (15.80) 5 (16.70) Discussion Yes 16 (84.20) 25 (83.30) Fisher Exact, p = 1.00 SMMSE Mean (SD) 6.63 (3.11) 5.20 (2.28) t=1.86, df=47, p=0.07 CSDD Mean (SD) 6.89 (4.27) 7.20 (4.11) t=0.29, df=47, p=0.80 BI Mean (SD) (13.59) (15.63) t=2.93, df = 47, p<0.01 Notes: SMMSE = Short Mini Mental State Examination; CSDD = Cornell Scale of Depression in Dementia; BI = Barthel Index; FS = Friendship Scale a = t = independent t-test

26 Table 3: Quality of life, social isolation and needs of dementia patients by study cohort Scales Study cohort Home care Nursing Home Statistics (a) WHO (3.53) (3.71) t=3.34, df=47, p<0.01 AQOL (0.18) 0.30 (0.20) t=2.28, df=47, p=0.03 FS (3.63) (3.68) t=4.01, df=47, p<0.01 CANE 8.21 (6.27) 6.19 (1.13) t=3.14, df=47, p<0.01 Notes: WHO-8 = EUROHIS-QOL; AQoL-8 = Short Assessment of Quality of Life; FS = Friendship Scale Means and standard deviations shown. a = independent t-test

27 Multivariate analysis multiple regression Table 4: Predictors of QoL in dementia patients Unstandardized Coefficients B Std. Error B R 2 (Constant) Living arrangement Health condition Financial status Cornell Scale for Depression * Satisfaction with children *p<0.05

28 The key findings (pilot study) : 1. Dementia patients living at home: have more income good relationship with children more socially connected have better physical functions Have their needs fulfilled have better overall QoL. 2. Suggested predictor for QoL = Depression Conclusion: Home care better overall QOL. Health care plans promoting community care for dementia patients supported by initiatives to reduce the burden of the caregivers.

29 Acknowledgement Research Management Institute of Universiti Teknologi MARA, Malaysia. The University of Melbourne. Ministry of Higher Education of Malaysia. Acknowledgeme nt

30 THANK YOU THANK YOU

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