C International Psychogeriatric Association 2014 International Psychogeriatrics (2015), 27:5, 815–824 doi:10.1017/S1041610214002609
Quality of life in people with cognitive impairment: nursing homes versus home care ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Azlina Wati Nikmat, S. Hassan Al-Mashoor and Nurul Azreen Hashim Psychological and Behavioral Medicine Unit, Faculty of Medicine, Universiti Teknologi MARA Malaysia, Sungai Buloh Campus, 47000 Sungai Buloh, Selangor, Malaysia
ABSTRACT
Background: The evaluation of quality of life (QoL) among older adults has become increasingly important, and living arrangements play a pivotal role in determining the QoL of people with cognitive impairment (PWCI). Although informal care (home-based) is favored, transition to formal care (residential care) often becomes necessary, especially in the later stages of cognitive impairment. The primary objective was to compare the QoL of PWCI in the community and nursing homes. Additionally, factors differentiate the QoL of PWCI in these two settings were identified. Methods: This is a quasi-experimental study design involving 219 older adults with cognitive impairment, aged 60–89 years old from both nursing home and home care. Participants completed the EUROPE Health Interview Survey-QoL (WHO-8), the Short Mini-Mental State Examination (SMMSE), the Barthel Index (BI), the Geriatric Depression Scale (GDS-15), and the Friendship Scale (FS). Results: There were significant differences in QoL, depression, social connectedness (p < 0.01) and cognitive functions (p = 0.01) between home care recipients and nursing home participants. No significant differences were observed with regards to health condition, co morbidities and physical functions between study cohorts. Conclusions: Older adults with cognitive impairment living at home experienced higher QoL, had better cognitive function, were less depressed and reported higher social connectedness compared to those living in institutional care. Therefore, support should be provided in enabling home care and empowering caregivers to provide better care for PWCI. Key words: aging, Alzheimer’s disease, community, institutional care
Introduction The number of people surviving until old age has been increasing in Malaysia, resulting in an increase in the susceptibility to diseases that commonly afflict the elderly including dementia (Arokiasamy, 1999). According to the report on dementia occurrence in Malaysia, the prevalence of cases reported in the year 2005 was 63.0 cases per 100,000 of population and projected to increase to 126.8 cases per 100,000 of population per year in 2020 (Access Economics, 2006). Factors such as older age, being female, having no formal education, being single, being bumiputera (indigenous ethnic group of Sabah and Sarawak) and living in rural Correspondence should be addressed to: Azlina Wati Nikmat, Senior Lecturer, Psychological and Behavioral Medicine Unit, Faculty of Medicine, Universiti Teknologi MARA Malaysia, Sungai Buloh Campus, 47000 Sungai Buloh, Selangor, Malaysia. Phone: +603 61265000; Fax: +603 61265224. Email: [email protected]. Received 1 Sep 2014; revision requested 9 Nov 2014; revised version received 7 Oct 2014; accepted 11 Nov 2014. First published online 11 December 2014.
areas has been associated with a higher prevalence of dementia (Hamid et al., 2011). Acknowledging that there is no cure for people with dementia at the moment, focus has been given to the care management of PWCI especially in relation to QoL. The concept of QoL varies among individuals, especially those from different age group, illness, countries or cultures. In view of the meaning of QoL among PWCI, it is proposed that affect, attachment, social contact, enjoyment of activities, sense of aesthetics in living environment, physical and mental health, and satisfaction with financial situation are important factors in assessing QoL in patient with dementia (Brod et al., 1999; Logsdon and Albert, 1999). Regarding these factors, studies reported that health status/satisfaction was found to be the strongest predictor of QoL in older adults, along with other factors such as number of chronic illnesses, meaning in life, having enough money and exercise (Paskulin and Molzahn, 2007). In another
816
A. W. Nikmat et al.
study, Arlt and colleagues reported there was a significant correlation between QoL and depression as reported by dementia patients, their caregivers and clinicians (Arlt et al., 2008). As for social factor, a replication QoL study using a random sample of 202 older adults found that emotional support and a healthy environment enhanced the meaning and purpose in life (Low and Molzahn, 2007). With regards to living arrangement, previous studies suggested that PWCI who lived in nursing homes experienced poor QoL. This evidence appears to be based on a mix of cross-sectional and longitudinal observation studies, with a few intervention trials, mainly conducted in Western societies (Missotten et al., 2009; te Boekhorst et al., 2009; Crespo et al., 2012). However, it is not known if the QoL of PWCI in the nursing homes is poorer compared to those living in the community. Studies which directly compare the QoL of PWCI in these two settings are very limited and provide inconclusive evidence (Selwood et al., 2005; Missotten et al., 2009; Leon-Salas, 2013). Furthermore, individuals’ studies from other countries suggest that the experience of QoL in PWCI varies among nations and cultures, thus leading to the justification for having a new study in Malaysia (Huang et al., 2009; Wolak et al., 2009). The rationale for this study may be to provide the best available knowledge to date in this field and to inform public policy, service administration, and care delivery.
Methods Study design and procedures This is a cross-sectional comparative observational study of PWCI receiving informal care (cared by family members) and formal care (nursing home). Participants were sampled from two different settings: nursing homes (PWCI residing in government nursing homes) and home care (PWCI who live with a carer and visit memory clinics in government hospitals as outpatients). Government nursing homes in Malaysia were built based on a mixture of a home-like environment and hospital model. It is a secured facility and fully funded by the government. Application for admission to government nursing homes should meet the pre-requisite criteria such as aged 60 years and older, cannot be cared for in the community, homeless, has been identified as needing nursing home level care, having poor financial support and consent from the patients. Approval to conduct the study for participants from nursing home was obtained from the Social Welfare Department of Malaysia, the Economic Plan Unit of Malaysia and
the Ministry of Women, Family and Community Development of Malaysia (three agencies). As for participants from memory clinics, referral to memory clinics was made by the primary care physicians or specialists following the recommendation by the Australia Practice Guideline 2003 and the Royal College of Psychiatrist 2005. Approval to conduct the study for participants in memory clinics was obtained from the Directors of hospitals and the Ministry of Health (four agencies). As for ethics, approval was sought and granted from the Human Research Ethics Committee of The University of Melbourne, Victoria, Australia, the Malaysia Research Ethics Committee and the National Institute of Health, Malaysia (three lots of ethics approval). Potential participants were identified from the list provided by the managers of the nursing homes and the nurses from the memory clinics, which started at the top with the patient who had been seen most recently in the memory clinic or moved most recently into the nursing home. Participants (aged between 60–89 years old) were contacted following the sequence from the list until the requisite sample size was reached. The nature and purpose of the study were explained to both the relatives and the participants before getting their consent. Following consent, participants were then assessed using the SMMSE and those with a SMMSE score of less than 11 (Braekhus et al., 1992) were included in the study and proceeded with the interview. The interview covered a set of questionnaires consisting of the socio-demographic information, the BI (Mahoney and Barthel, 1965), the EUROHIS-QOL (WHO-8) (Power, 2003), the FS (Hawthorne, 2006) and the GDS (Yesavage et al., 1983). These questionnaires were chosen following a thorough review conducted by the main author (A. Nikmat) prior to this study. Questionnaires were translated into Malay language using forward and backwards translation and reconciliation done by the National Translation Institute of Malaysia prior to administration. The duration of the interview was between 30 to 45 minutes. To minimize participant fatigue, participants were offered a break during the interviews. The administration of scales was terminated when a participant proved to be unwilling or unable to respond to the questions that were asked. Respondents and sample size Participants were recruited from government nursing homes and government memory clinics. Of nine nursing homes in West Malaysia, four were selected and agreed to participate in this
QoL in PWCI
817
study; Rumah Sri Kenangan Seremban, Rumah Sri Kenangan Melaka, Rumah Sri Kenangan Ulu Kinta and Rumah Sri Kenangan Kelantan. As for government hospitals, 3 out of 12 memory clinics were approached and agreed to participate in this study. The three memory clinics were; Hospital Sungai Buloh, Hospital Selayang and Hospital Kuala Lumpur. These facilities were chosen based on geographical factors and accessibility. Inclusion criteria for the study are for participants to:
was scored binomially which gave a total score of 12. Giving a sensitivity of 98% and specificity of 91%, a cut-off score of ten was used to differentiate those with cognitive impairment (Braekhus et al., 1992). Classification of cognitive impairment was defined based on the SMMSE score as; 1) mild to moderate cognitive impairment (a score between 5– 10) and 2) moderate to severe cognitive impairment (a score ranging from 0 to 4). The Cronbach’s α value for the SMMSE was 0.70.
1. Be aged between 60–89 years old. 2. Living in a government nursing home or in the community with a carer (any carer) and receiving treatment from a memory clinic (government hospitals). 3. Sufficient command of the Malay or English language (able to complete a questionnaire or interview). 4. Score of less than 11 on the SMMSE. 5. Be able to provide informed consent.
EUROPE Health Interview Survey-QoL (WHO-8) The WHO-8 is a short HRQoL measure that was derived from the original WHOQOL-100 and the WHOQOL-BREF (Power, 2003; Schmidt et al., 2006). It consists of eight items, two from each of the psychological, physical, social and environmental domains of the WHOQOL-BREF (Power, 2003). Each item is rated using a five-point response format, ranging from “0 = not at all/very poor” to “5 = completely/very good.” The overall HRQoL score is computed by summing all eight items, with higher scores indicating better HRQoL (Power, 2003). The scale showed a good internal consistency with a Cronbach’s α value of 0.81.
A total of 720 cases (nursing homes cases = 264, memory clinics cases = 456) were reviewed from patient’s/resident’s lists. Out of 720 cases reviewed, 315 older adults (nursing homes cases, n = 149, memory clinics cases, n = 166) met the age criteria and were approached to participate in the study. In all, 295 older adults gave their verbal consent but only 271 provided a signed consent form. Out of 271 older adults, 266 were screened for presence of cognitive impairment. The remaining five were not screened due to the presence of psychotic symptoms during the interview (2), communication problem (1), being bed ridden (1) and defaulted appointment (1).
Measures Demographic data Socio-demographic questions included age, gender, ethnicity, relationship status, education attained, living arrangement, length of stay in nursing home, number of children, relationship satisfaction with children, financial situation, self-reported health conditions, and length of suffering from cognitive impairment. Short Mini Mental State Examination (SMMSE) The SMMSE (Braekhus et al., 1992) is a brief cognitive screening tool derived from the original Mini-Mental State Examination (Folstein et al., 1975). It consists of 12 items namely year, month, date, day, country, postal code, spell backwards, recall, repeat sentence, three stage command, write a sentence and copy design. Each of these items
The Geriatric Depression Scale (GDS-15) The GDS (Yesavage et al., 1983) is a self-rating scale developed to screen depression in elderly population. The original version of GDS consists of 30 items (GDS-30), while a short version of the GDS contains 15 items (GDS-15). These items seek information representing lowered affect, decreased activity levels, irritability, withdrawal, distressing thoughts, and negative judgments about the past, present and future (Yesavage et al., 1983). It is presented in a yes/no response format with one point is assigned to each answer. Items were summed and higher scores indicate higher depression level. The Cronbach’s α value for the GDS-15 was 0.89. Barthel Index (BI) The BI (Mahoney and Barthel, 1965) consists of ten items; feeding, moving from wheelchair to bed and return, getting on and off toilet, bathing self, walking on level surface, ascending and descending stairs, dressing, and controlling bowels and bladder (Mahoney and Barthel, 1965). Each item is scored on a three-point scale, with 0 = totally dependent. 1 = some help needed and 2 = totally independent. Items are weighted and summed to give a score range from 0 to 100, with higher scores indicating total independence. The Cronbach’s α value for the BI was 0.91.
818
A. W. Nikmat et al.
Friendship Scale (FS) The FS (Hawthorne, 2006) is an instrument which assesses aspects of both perceived social isolation and loneliness. It consists of six-items with three of the items covering the feelings of loneliness and the other three items probing the importance of actual social contacts. Responses are categorized into five levels of perceived social isolation (almost always/most of the time/about half the time/occasionally/not at all). A total score is derived from the summation of item responses (items one, three and six are reversed prior to scoring). A score of “0” indicates complete social isolation and a score of “24” indicates high social connectedness (Hawthorne, 2006). The Cronbach’s α value for the FS was 0.91. Data analysis Prior to analysis, all variables were examined for accuracy of data entry, missing values, pattern of distributions and assumptions of multivariate analysis. Descriptive statistics and categorical variables were presented as percentages. Categorical data was analyzed using χ2 (Chi-square); where distributional assumptions were violated, the Fisher exact test was used. Scales were scored using the instrument developers recommended methods and algorithms. In the interests of readability and comparability with other studies, the original scale scores were presented as means and standard deviations (SDs). Inferential statistical analyses were carried out on the original score data where this is normally distributed; where it is non-normally distributed, medians and inter-quartile ranges will be reported and the non-parametric tests were used instead. Where there are multiple levels to be examined, analysis of variance (ANOVA) or the Kruskall–Wallis H test were used. All data will be entered and analyzed using SPSS version 16.0.
Results Of the 266, a total of 224 met the inclusion criteria for the study and completed the questionnaires. However, during the final data cleaning process prior to analysis, five participants exceeded the age limit set for this study and therefore their data was excluded from the data analysis, which gave a total number of 219 participants. Following the recommendation for calculating the response rate by Lynn and colleagues, the full response rate for the study was 69.5% (Lynn et al., 2001). Non-consenting participants were statistically younger (mean = 69.07, SD = 5.89) compared to those who consented (mean = 72.06,
SD = 7.70) (t = −2.46, df = 313, p = 0.01). There was no significant difference with regard to gender (χ2 = 0.54, df = 1, p = 0.46) and place of residence (χ2 = 0.07, df = 1, p = 0.79). Based on the study cohorts, the participation rate for the nursing home was 73.8% and 65.7% for home care. There was no significant difference in participation rates between study cohorts (χ2 = 2.47, df = 1, p = 0.12). Comparison of socio-demographic profile of people with cognitive impairment in nursing homes and home care Table 1 shows the comparison of sociodemographic profile of PWCI in home care versus nursing home. Out of 219 participants, 109 participants were from the home care and 110 were from nursing homes. There were no significant differences in age, gender and level of education attained between the study cohorts (all p > 0.05). Among the three ethnicities, the proportion of the Malays in nursing homes was significantly higher (69.10%) compared to the Chinese (13.60%) and the Indians (17.30%) (χ2 = 34.71, df = 2, p < 0.01). There were significant differences in marital status, family support and relationship satisfaction between PWCI in home care and those in nursing homes. Participants in the nursing homes were more likely to be single/separated (58.20%) (χ2 = 92.93, df = 2, p < 0.01), have no partner/child (56.40%) (χ2 = 75.40, df = 1, p < 0.01) and reported unsatisfactory relationships with their children (91.30%) (χ2 = 94.75, df = 1, p < 0.01). In addition, those in nursing homes also reported significantly lower income (91.30%) (χ2 = 107.58, df = 1, p < 0.01) compared to those receiving care at home. Comparison of outcome measures of people with cognitive impairment in nursing homes and home care With regards to outcome measures, non-parametric analysis was used as the data was non-normally distributed. However, for the ease of interpretation, means and SDs are reported. There were significant differences in cognitive impairment, depressive symptoms, QoL and social connectedness between PWCI in home care and those in nursing homes (Table 2). PWCI in the nursing homes had significantly lower cognitive function (Mann–W = 4,818.00, p = 0.01) compared to those in home care, with more than 40% of PWCI living in nursing homes suffered from moderate/severe cognitive impairment.
QoL in PWCI
819
Table 1. Comparison of socio-demographic profiles of people with cognitive impairment in nursing home and home care VARIABLES
STUDY COHORT HOME CARE N
(%)
NURSING HOME N
(%)
E FF E C T STATISTICS
(A)
SIZE
(D)
.........................................................................................................................................................................................................................................................................................................................
Age Gender Ethnicity
Education
Marital status
Number of children Relationship Satisfaction Financial status Months of stay in nursing home Months since diagnosis Health condition
Mean (SD) 73.66 (7.68) Male 56 (51.40) Female 53 (48.60) Malay 34(31.20) Chinese 48 (44.00) Indian 27 (24.80) Nonformal 26 (23.90) Primary school 72(66.10) Higher 11 (10.10) Single/separated 3 (2.80) Partnered 53 (48.60) Widowed 53 (48.60) Mean (SD) 4.08 (2.54) Satisfied 95 (90.50) Dissatisfied 10 (9.50) Average 88 (80.70) Below average 21 (19.30) Mean (SD) –
71.56 (7.79) 55 (50.00) 55 (50.00) 76 (69.10) 15 (13.60) 19 (17.30) 36 (32.70) 62 (56.40) 12 (10.90) 64 (58.20) 7 (6.40) 39 (35.50) 1.38 (2.21) 4 (8.70) 42 (91.30) 12 (10.90) 98 (89.10) 56.50 (54.84)
Mean (SD) Not healthy Healthy
31.20 (35.81) 48 (47.50) 62 (52.50)
38.18 (40.50) 53 (52.50) 56 (47.50)
t =2.00, df=217, p =0.05
0.27
χ2 =0.04, df=1, p =0.84
χ2 =34.71, df=2, p
Quality of life in people with cognitive impairment: nursing homes versus home care ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Azlina Wati Nikmat, S. Hassan Al-Mashoor and Nurul Azreen Hashim Psychological and Behavioral Medicine Unit, Faculty of Medicine, Universiti Teknologi MARA Malaysia, Sungai Buloh Campus, 47000 Sungai Buloh, Selangor, Malaysia
ABSTRACT
Background: The evaluation of quality of life (QoL) among older adults has become increasingly important, and living arrangements play a pivotal role in determining the QoL of people with cognitive impairment (PWCI). Although informal care (home-based) is favored, transition to formal care (residential care) often becomes necessary, especially in the later stages of cognitive impairment. The primary objective was to compare the QoL of PWCI in the community and nursing homes. Additionally, factors differentiate the QoL of PWCI in these two settings were identified. Methods: This is a quasi-experimental study design involving 219 older adults with cognitive impairment, aged 60–89 years old from both nursing home and home care. Participants completed the EUROPE Health Interview Survey-QoL (WHO-8), the Short Mini-Mental State Examination (SMMSE), the Barthel Index (BI), the Geriatric Depression Scale (GDS-15), and the Friendship Scale (FS). Results: There were significant differences in QoL, depression, social connectedness (p < 0.01) and cognitive functions (p = 0.01) between home care recipients and nursing home participants. No significant differences were observed with regards to health condition, co morbidities and physical functions between study cohorts. Conclusions: Older adults with cognitive impairment living at home experienced higher QoL, had better cognitive function, were less depressed and reported higher social connectedness compared to those living in institutional care. Therefore, support should be provided in enabling home care and empowering caregivers to provide better care for PWCI. Key words: aging, Alzheimer’s disease, community, institutional care
Introduction The number of people surviving until old age has been increasing in Malaysia, resulting in an increase in the susceptibility to diseases that commonly afflict the elderly including dementia (Arokiasamy, 1999). According to the report on dementia occurrence in Malaysia, the prevalence of cases reported in the year 2005 was 63.0 cases per 100,000 of population and projected to increase to 126.8 cases per 100,000 of population per year in 2020 (Access Economics, 2006). Factors such as older age, being female, having no formal education, being single, being bumiputera (indigenous ethnic group of Sabah and Sarawak) and living in rural Correspondence should be addressed to: Azlina Wati Nikmat, Senior Lecturer, Psychological and Behavioral Medicine Unit, Faculty of Medicine, Universiti Teknologi MARA Malaysia, Sungai Buloh Campus, 47000 Sungai Buloh, Selangor, Malaysia. Phone: +603 61265000; Fax: +603 61265224. Email: [email protected]. Received 1 Sep 2014; revision requested 9 Nov 2014; revised version received 7 Oct 2014; accepted 11 Nov 2014. First published online 11 December 2014.
areas has been associated with a higher prevalence of dementia (Hamid et al., 2011). Acknowledging that there is no cure for people with dementia at the moment, focus has been given to the care management of PWCI especially in relation to QoL. The concept of QoL varies among individuals, especially those from different age group, illness, countries or cultures. In view of the meaning of QoL among PWCI, it is proposed that affect, attachment, social contact, enjoyment of activities, sense of aesthetics in living environment, physical and mental health, and satisfaction with financial situation are important factors in assessing QoL in patient with dementia (Brod et al., 1999; Logsdon and Albert, 1999). Regarding these factors, studies reported that health status/satisfaction was found to be the strongest predictor of QoL in older adults, along with other factors such as number of chronic illnesses, meaning in life, having enough money and exercise (Paskulin and Molzahn, 2007). In another
816
A. W. Nikmat et al.
study, Arlt and colleagues reported there was a significant correlation between QoL and depression as reported by dementia patients, their caregivers and clinicians (Arlt et al., 2008). As for social factor, a replication QoL study using a random sample of 202 older adults found that emotional support and a healthy environment enhanced the meaning and purpose in life (Low and Molzahn, 2007). With regards to living arrangement, previous studies suggested that PWCI who lived in nursing homes experienced poor QoL. This evidence appears to be based on a mix of cross-sectional and longitudinal observation studies, with a few intervention trials, mainly conducted in Western societies (Missotten et al., 2009; te Boekhorst et al., 2009; Crespo et al., 2012). However, it is not known if the QoL of PWCI in the nursing homes is poorer compared to those living in the community. Studies which directly compare the QoL of PWCI in these two settings are very limited and provide inconclusive evidence (Selwood et al., 2005; Missotten et al., 2009; Leon-Salas, 2013). Furthermore, individuals’ studies from other countries suggest that the experience of QoL in PWCI varies among nations and cultures, thus leading to the justification for having a new study in Malaysia (Huang et al., 2009; Wolak et al., 2009). The rationale for this study may be to provide the best available knowledge to date in this field and to inform public policy, service administration, and care delivery.
Methods Study design and procedures This is a cross-sectional comparative observational study of PWCI receiving informal care (cared by family members) and formal care (nursing home). Participants were sampled from two different settings: nursing homes (PWCI residing in government nursing homes) and home care (PWCI who live with a carer and visit memory clinics in government hospitals as outpatients). Government nursing homes in Malaysia were built based on a mixture of a home-like environment and hospital model. It is a secured facility and fully funded by the government. Application for admission to government nursing homes should meet the pre-requisite criteria such as aged 60 years and older, cannot be cared for in the community, homeless, has been identified as needing nursing home level care, having poor financial support and consent from the patients. Approval to conduct the study for participants from nursing home was obtained from the Social Welfare Department of Malaysia, the Economic Plan Unit of Malaysia and
the Ministry of Women, Family and Community Development of Malaysia (three agencies). As for participants from memory clinics, referral to memory clinics was made by the primary care physicians or specialists following the recommendation by the Australia Practice Guideline 2003 and the Royal College of Psychiatrist 2005. Approval to conduct the study for participants in memory clinics was obtained from the Directors of hospitals and the Ministry of Health (four agencies). As for ethics, approval was sought and granted from the Human Research Ethics Committee of The University of Melbourne, Victoria, Australia, the Malaysia Research Ethics Committee and the National Institute of Health, Malaysia (three lots of ethics approval). Potential participants were identified from the list provided by the managers of the nursing homes and the nurses from the memory clinics, which started at the top with the patient who had been seen most recently in the memory clinic or moved most recently into the nursing home. Participants (aged between 60–89 years old) were contacted following the sequence from the list until the requisite sample size was reached. The nature and purpose of the study were explained to both the relatives and the participants before getting their consent. Following consent, participants were then assessed using the SMMSE and those with a SMMSE score of less than 11 (Braekhus et al., 1992) were included in the study and proceeded with the interview. The interview covered a set of questionnaires consisting of the socio-demographic information, the BI (Mahoney and Barthel, 1965), the EUROHIS-QOL (WHO-8) (Power, 2003), the FS (Hawthorne, 2006) and the GDS (Yesavage et al., 1983). These questionnaires were chosen following a thorough review conducted by the main author (A. Nikmat) prior to this study. Questionnaires were translated into Malay language using forward and backwards translation and reconciliation done by the National Translation Institute of Malaysia prior to administration. The duration of the interview was between 30 to 45 minutes. To minimize participant fatigue, participants were offered a break during the interviews. The administration of scales was terminated when a participant proved to be unwilling or unable to respond to the questions that were asked. Respondents and sample size Participants were recruited from government nursing homes and government memory clinics. Of nine nursing homes in West Malaysia, four were selected and agreed to participate in this
QoL in PWCI
817
study; Rumah Sri Kenangan Seremban, Rumah Sri Kenangan Melaka, Rumah Sri Kenangan Ulu Kinta and Rumah Sri Kenangan Kelantan. As for government hospitals, 3 out of 12 memory clinics were approached and agreed to participate in this study. The three memory clinics were; Hospital Sungai Buloh, Hospital Selayang and Hospital Kuala Lumpur. These facilities were chosen based on geographical factors and accessibility. Inclusion criteria for the study are for participants to:
was scored binomially which gave a total score of 12. Giving a sensitivity of 98% and specificity of 91%, a cut-off score of ten was used to differentiate those with cognitive impairment (Braekhus et al., 1992). Classification of cognitive impairment was defined based on the SMMSE score as; 1) mild to moderate cognitive impairment (a score between 5– 10) and 2) moderate to severe cognitive impairment (a score ranging from 0 to 4). The Cronbach’s α value for the SMMSE was 0.70.
1. Be aged between 60–89 years old. 2. Living in a government nursing home or in the community with a carer (any carer) and receiving treatment from a memory clinic (government hospitals). 3. Sufficient command of the Malay or English language (able to complete a questionnaire or interview). 4. Score of less than 11 on the SMMSE. 5. Be able to provide informed consent.
EUROPE Health Interview Survey-QoL (WHO-8) The WHO-8 is a short HRQoL measure that was derived from the original WHOQOL-100 and the WHOQOL-BREF (Power, 2003; Schmidt et al., 2006). It consists of eight items, two from each of the psychological, physical, social and environmental domains of the WHOQOL-BREF (Power, 2003). Each item is rated using a five-point response format, ranging from “0 = not at all/very poor” to “5 = completely/very good.” The overall HRQoL score is computed by summing all eight items, with higher scores indicating better HRQoL (Power, 2003). The scale showed a good internal consistency with a Cronbach’s α value of 0.81.
A total of 720 cases (nursing homes cases = 264, memory clinics cases = 456) were reviewed from patient’s/resident’s lists. Out of 720 cases reviewed, 315 older adults (nursing homes cases, n = 149, memory clinics cases, n = 166) met the age criteria and were approached to participate in the study. In all, 295 older adults gave their verbal consent but only 271 provided a signed consent form. Out of 271 older adults, 266 were screened for presence of cognitive impairment. The remaining five were not screened due to the presence of psychotic symptoms during the interview (2), communication problem (1), being bed ridden (1) and defaulted appointment (1).
Measures Demographic data Socio-demographic questions included age, gender, ethnicity, relationship status, education attained, living arrangement, length of stay in nursing home, number of children, relationship satisfaction with children, financial situation, self-reported health conditions, and length of suffering from cognitive impairment. Short Mini Mental State Examination (SMMSE) The SMMSE (Braekhus et al., 1992) is a brief cognitive screening tool derived from the original Mini-Mental State Examination (Folstein et al., 1975). It consists of 12 items namely year, month, date, day, country, postal code, spell backwards, recall, repeat sentence, three stage command, write a sentence and copy design. Each of these items
The Geriatric Depression Scale (GDS-15) The GDS (Yesavage et al., 1983) is a self-rating scale developed to screen depression in elderly population. The original version of GDS consists of 30 items (GDS-30), while a short version of the GDS contains 15 items (GDS-15). These items seek information representing lowered affect, decreased activity levels, irritability, withdrawal, distressing thoughts, and negative judgments about the past, present and future (Yesavage et al., 1983). It is presented in a yes/no response format with one point is assigned to each answer. Items were summed and higher scores indicate higher depression level. The Cronbach’s α value for the GDS-15 was 0.89. Barthel Index (BI) The BI (Mahoney and Barthel, 1965) consists of ten items; feeding, moving from wheelchair to bed and return, getting on and off toilet, bathing self, walking on level surface, ascending and descending stairs, dressing, and controlling bowels and bladder (Mahoney and Barthel, 1965). Each item is scored on a three-point scale, with 0 = totally dependent. 1 = some help needed and 2 = totally independent. Items are weighted and summed to give a score range from 0 to 100, with higher scores indicating total independence. The Cronbach’s α value for the BI was 0.91.
818
A. W. Nikmat et al.
Friendship Scale (FS) The FS (Hawthorne, 2006) is an instrument which assesses aspects of both perceived social isolation and loneliness. It consists of six-items with three of the items covering the feelings of loneliness and the other three items probing the importance of actual social contacts. Responses are categorized into five levels of perceived social isolation (almost always/most of the time/about half the time/occasionally/not at all). A total score is derived from the summation of item responses (items one, three and six are reversed prior to scoring). A score of “0” indicates complete social isolation and a score of “24” indicates high social connectedness (Hawthorne, 2006). The Cronbach’s α value for the FS was 0.91. Data analysis Prior to analysis, all variables were examined for accuracy of data entry, missing values, pattern of distributions and assumptions of multivariate analysis. Descriptive statistics and categorical variables were presented as percentages. Categorical data was analyzed using χ2 (Chi-square); where distributional assumptions were violated, the Fisher exact test was used. Scales were scored using the instrument developers recommended methods and algorithms. In the interests of readability and comparability with other studies, the original scale scores were presented as means and standard deviations (SDs). Inferential statistical analyses were carried out on the original score data where this is normally distributed; where it is non-normally distributed, medians and inter-quartile ranges will be reported and the non-parametric tests were used instead. Where there are multiple levels to be examined, analysis of variance (ANOVA) or the Kruskall–Wallis H test were used. All data will be entered and analyzed using SPSS version 16.0.
Results Of the 266, a total of 224 met the inclusion criteria for the study and completed the questionnaires. However, during the final data cleaning process prior to analysis, five participants exceeded the age limit set for this study and therefore their data was excluded from the data analysis, which gave a total number of 219 participants. Following the recommendation for calculating the response rate by Lynn and colleagues, the full response rate for the study was 69.5% (Lynn et al., 2001). Non-consenting participants were statistically younger (mean = 69.07, SD = 5.89) compared to those who consented (mean = 72.06,
SD = 7.70) (t = −2.46, df = 313, p = 0.01). There was no significant difference with regard to gender (χ2 = 0.54, df = 1, p = 0.46) and place of residence (χ2 = 0.07, df = 1, p = 0.79). Based on the study cohorts, the participation rate for the nursing home was 73.8% and 65.7% for home care. There was no significant difference in participation rates between study cohorts (χ2 = 2.47, df = 1, p = 0.12). Comparison of socio-demographic profile of people with cognitive impairment in nursing homes and home care Table 1 shows the comparison of sociodemographic profile of PWCI in home care versus nursing home. Out of 219 participants, 109 participants were from the home care and 110 were from nursing homes. There were no significant differences in age, gender and level of education attained between the study cohorts (all p > 0.05). Among the three ethnicities, the proportion of the Malays in nursing homes was significantly higher (69.10%) compared to the Chinese (13.60%) and the Indians (17.30%) (χ2 = 34.71, df = 2, p < 0.01). There were significant differences in marital status, family support and relationship satisfaction between PWCI in home care and those in nursing homes. Participants in the nursing homes were more likely to be single/separated (58.20%) (χ2 = 92.93, df = 2, p < 0.01), have no partner/child (56.40%) (χ2 = 75.40, df = 1, p < 0.01) and reported unsatisfactory relationships with their children (91.30%) (χ2 = 94.75, df = 1, p < 0.01). In addition, those in nursing homes also reported significantly lower income (91.30%) (χ2 = 107.58, df = 1, p < 0.01) compared to those receiving care at home. Comparison of outcome measures of people with cognitive impairment in nursing homes and home care With regards to outcome measures, non-parametric analysis was used as the data was non-normally distributed. However, for the ease of interpretation, means and SDs are reported. There were significant differences in cognitive impairment, depressive symptoms, QoL and social connectedness between PWCI in home care and those in nursing homes (Table 2). PWCI in the nursing homes had significantly lower cognitive function (Mann–W = 4,818.00, p = 0.01) compared to those in home care, with more than 40% of PWCI living in nursing homes suffered from moderate/severe cognitive impairment.
QoL in PWCI
819
Table 1. Comparison of socio-demographic profiles of people with cognitive impairment in nursing home and home care VARIABLES
STUDY COHORT HOME CARE N
(%)
NURSING HOME N
(%)
E FF E C T STATISTICS
(A)
SIZE
(D)
.........................................................................................................................................................................................................................................................................................................................
Age Gender Ethnicity
Education
Marital status
Number of children Relationship Satisfaction Financial status Months of stay in nursing home Months since diagnosis Health condition
Mean (SD) 73.66 (7.68) Male 56 (51.40) Female 53 (48.60) Malay 34(31.20) Chinese 48 (44.00) Indian 27 (24.80) Nonformal 26 (23.90) Primary school 72(66.10) Higher 11 (10.10) Single/separated 3 (2.80) Partnered 53 (48.60) Widowed 53 (48.60) Mean (SD) 4.08 (2.54) Satisfied 95 (90.50) Dissatisfied 10 (9.50) Average 88 (80.70) Below average 21 (19.30) Mean (SD) –
71.56 (7.79) 55 (50.00) 55 (50.00) 76 (69.10) 15 (13.60) 19 (17.30) 36 (32.70) 62 (56.40) 12 (10.90) 64 (58.20) 7 (6.40) 39 (35.50) 1.38 (2.21) 4 (8.70) 42 (91.30) 12 (10.90) 98 (89.10) 56.50 (54.84)
Mean (SD) Not healthy Healthy
31.20 (35.81) 48 (47.50) 62 (52.50)
38.18 (40.50) 53 (52.50) 56 (47.50)
t =2.00, df=217, p =0.05
0.27
χ2 =0.04, df=1, p =0.84
χ2 =34.71, df=2, p
