Quality of life of Dementia Patients in Malaysia: What did we believe and what did we found?

Azlina Wati Nikmat1,2 Graeme Hawthorne1, Sam Korn1

1Department of Psychiatry, The University of Melbourne2Department of Psychiatry, University Teknologi MARA

Quality of life of Dementia Patients in Malaysia:

What did we believe and what did we found?

11th Global Conference on Ageing "Ageing Connects”11th Global Conference on Ageing "Ageing Connects”

Predicted future prevalence of dementia

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)

11th Global Conference on Ageing "Ageing Connects”

Why aging matters: dementia is a function of age

Source: Jorm et al (1987)


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 54.3 43.9 7.4 18.5 124.2

Glaucoma 5.7 7.9 0.4 1.5 15.5

Alzheimer and other dementias

1.3 7.0 0.4 6.2 14.9

Cerebro-vascular Disease

4.0 4.9 1.4 2.2 12.6

Rheumatoid arthritis

5.9 3.0 1.3 1.7 11.9

* WHO THE GLOBAL BURDEN OF DISEASE – 2004 UPDATE, 2008

Dementia prevalence compared with other common medical conditions (millions)

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).


Dementia & caregiving

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.

Literature review – I: search


Keyword CINAHL PsycINFO Medline

Dementia 7995 64722 21777

Quality of life 8890 13486 4648

Dementia AND Quality of life 111 1210 152

29 related papers; 24 shared papers and 5 unique papers

Dementia AND Quality of lifeAND Nursing home/home care 5 343 5

12 related papers; 5 shared papers and 7 unique papers


Literature review – II: N. papers

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


Literature review – III: outcomes

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


Literature review – III: outcomes (cont.)

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)


Literature review – IV: conclusions

Methodology


The study protocol

Aims:

To identify and compare the quality of life of dementia patients in nursing home and those in community (cared by family members)

Objectives

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)


Significance of the study

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.


Conceptual framework of study

QoLMental health/psychological

Physical functions/activities

Environmental

Social relationship


Research design and Sampling

• 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


Procedure

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

Administer SMMSE

SMMSE score ≥11

SMMSE score <11

Exit

Administration of other assessments

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Inclusion criteria

- Consented respondents age 60-89 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

Exclusion criteria

- 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


Measurements : Socio-demographic information, WHO-8, AQoL-8, FS, CSDD, CANE-S, Barthel Index

An average of 60-90 minutes to administer the questionnaires


Measurements

Sample size calculation – based on estimates

• Nursing Homes: Mean = 21.22, SD = 4.64 • Home Care: Mean = 23.29, SD = 4.56

22

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nen ZZsdsdn

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): 830-832.• POWER et al (2005). Development of the WHOQOL-OLD module. Quality of Life Research. 14 (10): 2197-214.Based on re-analysis of the Melbourne WHOQOL-OLD study data, N = 758 cases.


Stratified sampling procedure

Location/ Nursing homes Home care TOTAL

Gender Cognitive severity Cognitive severity

Mild a Moderate b Mild a Moderate b

Male 60-75 14 14 14 14 56

76-89 14 14 14 14 56

Female 60-75 14 14 14 14 56

76-89 14 14 14 14 56

56 56 56 56

TOTAL 112 112 224

Cognitive severity measured by SMMSEa = SMMSE 6-10b = SMMSE 0-5


Source of reference: POWER et al (2005). Development of the WHOQOL-OLD module. Quality of Life Research. 14 (10): 2197-214.Based on re-analysis of the Melbourne WHOQOL-OLD study data, N = 758 cases.


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%.

Mean age : 70.4 (7.44) Female : 55.1 % Education : Primary school (46.9 % ) High school (28.6 %) Financial status :

Average (36.7 %)Slightly below average (51 %)

Relationship satisfaction :

Demographic results

63%

27%

10%

Ethnicity

MalayChineseIndian

12%

31%

12%

45%

Marital status

SingleMarriedSeparatedWidowed

Very satisfied 8.2 %

Satisfied 28.6 %

Neither 10.2 %

Dissatisfied 10.2 %

Very dissatisfied 65.3 %

Self reported health : Healthy (65.3%) On medication : 83.7% Psychiatry meds : 38.8% No. of comorbidities

Health results

69%

29%

2%

0 to 34 to 7more than 7

Logistic regression


Table 1: Demographic profiles of dementia patients in home care and nursing homes

Study cohort Statistics

Home care Nursing home

N (%) N (%) Relationship satisfaction with children

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) χ2=21.10, df=1, p<0.01

Uni-variate analysis

Discussion


Table 2: Health status of participants by study cohort

Study cohort

Home care Nursing home Statistics (a)

Months since diagnosis

Mean (SD) 26.83 (32.0) 33.82 (15.94) t=0.65, df=21, p=0.52

Health condition Not healthy 5 (26.30) 12 (40.00)

Healthy 14 (73.70) 18 (60.00) χ2=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)

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) 90.26 (13.59) 77.50 (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


Table 3: Quality of life, social isolation and needs of dementia patients by study cohort

ScalesStudy cohort

Home care Nursing Home Statistics (a)

WHO-8 19.63 (3.53) 16.07 (3.71) t=3.34, df=47, p<0.01

AQOL-8 0.43 (0.18) 0.30 (0.20) t=2.28, df=47, p=0.03

FS 15.11 (3.63) 10.80 (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

Multivariate analysis – multiple regression

Table 4: Predictors of QoL in dementia patients

Unstandardized CoefficientsB R2 B Std. Error

(Constant) 28.332 3.125

Living arrangement -1.644 1.574 -.209

Health condition 2.035 1.386 .225

Financial status -1.975 1.038 -.356

Cornell Scale for Depression -.301 .133 -.325*

Satisfaction with children -.035 .549 -.012 0.48

*p<0.05

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.


Conclusion

Research Management Institute of Universiti Teknologi MARA, Malaysia.

The University of Melbourne.

Ministry of Higher Education of Malaysia.

Acknowledgement


Acknowledgement

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Quality of life of Dementia Patients in Malaysia: What did we believe and what did we found?