4 nikmat-qol of dementia patients in malaysia 09052012

Azlina Wati Nikmat1,2
Graeme Hawthorne1, Sam Korn1
1Department of Psychiatry, The University of Melbourne

2Department of Psychiatry, University Teknologi MARA

11th Global Conference on Ageing "Ageing Connects”

 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)


Source: Jorm et al (1987)


Disabling Low and middle income High income countries World
condition countries

0-59 Years 60 years and 0-59 Years 60 years and All age
over over
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 1.3 7.0 0.4 6.2 14.9
other dementias

Cerebro- 4.0 4.9 1.4 2.2 12.6
vascular
Disease
Rheumatoid 5.9 3.0 1.3 1.7 11.9
arthritis

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

 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).


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.


Literature review – II: N. papers

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 life
5 343 5
AND Nursing home/home care

12 related papers; 5 shared papers and 7 unique papers


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


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


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)


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)


 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)


 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.


Mental health/
psychological

Physical
Social
relationship QoL functions/
activities

Environmental


• 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


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

SMMSE score ≥11
Administer
SMMSE
Administration of other
SMMSE score <11
assessments

Inclusion criteria Exclusion criteria

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


Measurements

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

 An average of 60-90 minutes to administer the questionnaires


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

( sd n  sd ne )( Z  Z1  ) 2
2 2

n
e   ne 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): 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 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): 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%.


Demographic results
Ethnicity

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

Health results

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

2%

29% 0 to 3
4 to 7

69% more than 7

Logistic regression
Uni-variate analysis
Table 1: Demographic profiles of dementia patients in home care and nursing homes

Study cohort Statistics
Home care Nursing home
N (%) N (%)
Relationship Satisfied 14 (82.40) 4 (26.70)
satisfaction with
children 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


Table 2: Health status of participants by study cohort
Study cohort
Home care Nursing home Statistics (a)
Months since Mean (SD) 26.83 (32.0) 33.82 (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) 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)
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) 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
Study cohort
Scales
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 Coefficients
B Std. Error B R2
(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.


Acknowledgement

 Research Management Institute of Universiti Teknologi MARA,
Malaysia.

 The University of Melbourne. Acknowledgeme
nt
 Ministry of Higher Education of Malaysia.


THANK YOU
THANK YOU


4 nikmat-qol of dementia patients in malaysia 09052012

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