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dementia in malaysia: issues and challenges

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Objective: The number of people surviving until old age has been increasing worldwide. Reductions in both fertility and mortality rates, better living standards, nutrition and health care are claimed to be the key factors that increase the proportion of aged people within the population. Nevertheless, growing numbers of older adults also increases the susceptibility to diseases that commonly afflict the elderly, such as dementia. In this article, we discuss on the current issues of dementia in Malaysia and its challenge in providing a better management and services for this population. Methods and Results: Review of literature by searching the databases CINAHL, SCOPUS, MEDLINE and PsychINFO from June 2010 to November 2010 was done on the issues involving dementia patients in Malaysia such as ageing trend, awareness and availability of services. Conclusion: Despite a limited number of studies on dementia in Malaysia, literature revealed the importance of acknowledging the issues and improving the services for the patients. Efforts should be made by the government and private sectors to promote healthy ageing in Malaysia
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DEMENTIA IN MALAYSIA: ISSUES AND CHALLENGES
ASEAN Journal of Psychiatry
1
REVIEW ARTICLE
DEMENTIA IN MALAYSIA: ISSUES AND CHALLENGES
Azlina Wati Nikmat*, Graeme Hawthorne*, S. Hassan Ahmad Al-Mashoor**
*
Department of Psychiatry, Faculty of Medicine, Dentistry and Health Sciences, University of
Melbourne, 3100 Melbourne, Australia;
**
Discipline of Psychological and Behavioral Medicine,
Faculty of Medicine, Universiti Teknologi MARA, 68000 Batu Caves, Malaysia
Abstract
Objective: The number of people surviving until old age has been increasing worldwide.
Reductions in both fertility and mortality rates, better living standards, nutrition and health care
are claimed to be the key factors that increase the proportion of aged people within the
population. Nevertheless, growing numbers of older adults also increases the susceptibility to
diseases that commonly afflict the elderly, such as dementia. In this article, we discuss on the
current issues of dementia in Malaysia and its challenge in providing a better management and
services for this population. Methods and Results: Review of literature by searching the
databases CINAHL, SCOPUS, MEDLINE and PsychINFO from June 2010 to November 2010
was done on the issues involving dementia patients in Malaysia such as ageing trend, awareness
and availability of services. Conclusion: Despite a limited number of studies on dementia in
Malaysia, literature revealed the importance of acknowledging the issues and improving the
services for the patients. Efforts should be made by the government and private sectors to
promote healthy ageing in Malaysia. ASEAN Journal of Psychiatry, Vol.12(1): Jan – June
2011: XX XX
Keywords: Dementia, Cognitive impairment, Malaysia, Elderly
Introduction
Malaysia is one of the developing countries
located in Southeast Asia. It consists of
thirteen states and three Federal Territories
with a total landmass of 329,845 square
kilometers (127,354 sq mi). The population
stands at over 28 million people with
proportions of 50.4% Malay, 23.7%
Chinese, 11% indigenous, 7.1% Indian and
7.8% others. The population growth rate for
the country in 2009 is about 1.7% per annum
with life expectancies at birth for males and
females at 70.5 years and 76.2 years
respectively [1].
Using United Nations (UN) and the
Malaysian Ministry of Health
recommendations to define elderly or ‘old
age’ in Malaysia, Karim [2] reported that the
proportion of the total population who were
elderly had increased steadily from 4.6% in
1957 to 5.7% in 1990. It is also predicted
that the proportion will continue to increase
from 6.3% in 2000 to 12% by the year 2030
[3]. The details are shown in Figure 1.
DEMENTIA IN MALAYSIA: ISSUES AND CHALLENGES
ASEAN Journal of Psychiatry
2
Figure 1: Past, present and future trends of senior citizens, Malaysia 1960-2030. Source:
Department of Statisics of Malaysia
Whilst the number of people reaching old
age is increasing, it is of concern to health
care providers and government [4,5].
Among the issues causing this concern are
the social, economic and wellbeing effects
[6]. For example, the most common
disabling illness associated with old age is
dementia [5], of which there are many types
including Alzheimer’s Disease, vascular
dementia and dementia due to general
medical conditions (substance abuse, head
trauma, HIV) [7]. According to the
Alzheimer Disease International report, the
prevalence of dementia in Malaysia in 2005
was 0.063% and the annual incidence rate
0.020% [5]. It is projected that this figure
will increase to 0.126% and 0.454% in 2020
and 2050 respectively [5]. With its rapid
growth and morbidity, it ranks the second on
the burden of disease in Asia Pacific Region
compared to sexually transmitted diseases
(excluding HIV/AIDS), poisoning, peptic
ulcer, malaria and breast cancer [8].
However, Malaysia, like other countries in
the Asia Pacific region may not be well
prepared to provide quality health and care
services for people with dementia and their
caregivers [5]. Among the challenges in
dealing with dementia in Asia include
limited awareness of the disease itself, the
existence of stigma, underutilization of
services, urbanization and migration, and
credibility of health care professionals [5,6,
9 – 12].
Methods
A systematic review of English articles was
conducted by searching the databases
CINAHL, SCOPUS, MEDLINE and
PsychINFO from June 2010 to November
2010. Keywords used include dementia,
cognitive impairment, Malaysia, elderly,
problem and issues.
Results
A total of 407 studies matched the search
and were screened using the following
selection criteria: (i) studies on dementia
patients in Malaysia (ii) studies involving
elderly in Malaysia. Studies that focus on
pharmacotherapy, validation of instruments
and other psychological and medical
problem (ie: depression, schizophrenia and
DEMENTIA IN MALAYSIA: ISSUES AND CHALLENGES
ASEAN Journal of Psychiatry
3
HIV related) were excluded. Relevant
literatures mostly discussed on three issues:
Awareness and stigma related to dementia,
the availability of resources and services and
the credibility of health care professional in
recognising the symptoms and providing
supports to the patients and their caregivers.
Discussion
Awareness of dementia and stigma
The main issues and challenges in dealing
with dementia in Malaysia are awareness
and stigma. Both awareness and stigma
associated with an illness are important
factors in determining how people response
towards it [10]. Regarding dementia
awareness, most people in Asian countries
like Malaysia, perceive dementia as a
normal part of aging instead of a specific
condition that needs to be treated [13-15].
According to Tsolaki et al [15], 73% of
caregivers in their study did not recognize
the signs of dementia and misinterpreted
these as a normal sign of aging. As a result,
it took about 6 to 16 months for the care
givers to seek medical advice from health
professionals [15].
Delay in illness detection subsequently leads
to poor quality of life and may induce
excessive stress and strain for families [14,
16]. In addition, it also hinders people with
dementia and their relatives from seeking
medical and social welfare services as they
may not be aware of what help is available,
they may perceive it as not appropriate for
them, there are issues of time commitment
and cost of care [5,10,17,18].
Stigma is another issue that plays an
important role in determining responses to
dementia. Findings from a study by La
Fontaine in exploring people’s perceptions
of ageing and dementia revealed that stigma
and ignorance were two major issues that
hindered people from seeking help [10].
This is further supported by other study by
McKenzie where carers acknowledged that
having a family member with dementia
would invite condemnation from others in
their own community. As a result, there was
a loss of social connectedness with friends
or other family members for the carers [19].
Resources and services
The resources and services available within
the country were explored based on the
information available from the Ministry of
Women, Family and Community
Development of Malaysia and relevant Non-
Government Organisations (NGOs)
websites.
To date, various community health and
support services are available to assist older
adults with dementia and their caregivers. In
Malaysia, these services are under the
responsibility of Social Welfare Department
of Malaysia. Services provided by the
ministry include health care, guidance,
counseling, recreation, religious teaching
and welfare services [20]. Welfare services
in this context refer to financial assistance
and institutional care which are
predominantly for those without family and
the indigent. Persons age 60 and above who
are registered with the Social Welfare
Department will be given a monthly
allowance of RM200 under the scheme
called Aid for Older Persons and they are
also entitled a discount when purchasing
artificial/orthopedic appliances and
spectacles or domestic travel [20].
The Ministry also administers 13 Homes for
the Older Persons to accommodate those
without the next of kin and 15 Day Care
Centers for the elderly who live in the
community [20]. A number of NGO’s are
also involved in providing services to older
people. In May 2000, it was reported that
DEMENTIA IN MALAYSIA: ISSUES AND CHALLENGES
ASEAN Journal of Psychiatry
4
3,218 NGO’s were involved in welfare and
with majority of them involved in providing
support for the needs of the elderly. In
addition, 157 institutional care and shelters
run by the NGOs were built to cater the
growing demands for services from people
of different social situations [20].
In addition, community support services
were introduced with an aim to assist people
with health or social problems maintain the
highest possible level of social functioning
and quality of life. In Malaysia, the most
common type of community support
services are palliative home care provided
by Hospis Malaysia and day care centres.
The Palliative home care team consists of
palliative care doctors, nurses, pharmacist,
clinical psychologist and occupational
therapists who visit patients at home,
hospitals and nursing homes [21]. Day care
centers on the other hand provide care for
the elderly who lived alone while their
caregiver went to work. Activities that were
offered at the day care centers include
recreation, sports, rehabilitation, religious
class and skill development [22].
Nevertheless, despite the advantages of
having these resources, the availability of
psychiatric care is still lacking especially in
rural areas. It is reported that the ratio for
psychiatrist in Malaysia is around 0.05 to
0.60 per 100 000 population. This is
significantly differ when compared to other
developed countries like Australia and other
European countries which have a ratio of 9
to 28.5 per 100 000 population [23].
Furthermore, ignorance on the resources and
services available can leads to the
underutilization of these facilities
[11,24,25]. In a study done by Brodaty on
109 dementia caregivers in Australia, out of
7 services offered in the community, 34.9%
of the respondents did not receive any
community services, 25.7% used only one
service, 14.7% used two services and 12.8%
used three services. Only 11.9% of the
respondents used more than 3 services [24].
The most common reasons given for non-
use were: perceived lack of need, with
65.2% for non-use respite and 91.7% for
non-use community nursing; and resistance
to accepting help from services, with 12%
for non-use respite and 9% for general home
help [24].
Credibility of the health care professionals
Another issue in dementia care relates to the
credibility of health care professionals.
Providing mental health services to a
multicultural community is a challenge to
the health care system [11,18, 26].
Differences in religious belief, language and
perceptions of mental illness which varies
across ethnic groups has been acknowledged
as factors that coloured help seeking
behaviours in this population [27].
These difference are acknowledged as
factors that colour help seeking behaviours
in this population [27]. In a study done by
La Fontaine and colleagues in exploring the
perceptions of ageing, dementia and
associated mental health difficulties amongst
British South Asians of Punjabi Indian
origin, one of the respondent quoted: ‘we are
afraid to come to mental health services
because no one will speak our
language…it’s so difficult to express
emotional difficulties in another language’
(group 3) [10]. In other study on care-giving
among minorities, caregivers acknowledged
that they might consider using the health
care services if the provider was trained and
sensitive to religious and cultural issues
[28].
In addition, studies have also found that lack
of knowledge among physicians hindered
the caregiver from reaching out to available
services and supports provided for dementia
patients and their caregivers [9,26]. Bruce
DEMENTIA IN MALAYSIA: ISSUES AND CHALLENGES
ASEAN Journal of Psychiatry
5
and Paterson, for example, revealed that
several carers complained about the
credibility of the general practitioners (GP)
to refer dementia patients to appropriate
services; and three respondents reported that
their GP had no knowledge of what support
services were available [9]. Additionally,
there are issues around the poor quality of
some services and ethnocentric issues that
hinder the elderly and the caregiver from
using available services [9,19,28,29].
Conclusion
Dementia has been recognized as one of the
troubling illnesses among the elderly. As the
population ages, it is predicted that dementia
will become increasingly important.
Although care management for the elderly in
Malaysia is still under development, efforts
are being made by the government to
improve the care provided for the elderly
with dementia. A range of services and
incentives have been introduced for the
benefits of dementia patients and their
caregivers. Nevertheless, these benefits will
be useless if the end-users do not utilize the
services provided for them.
Therefore, importantly, efforts should be
made to develop awareness and increase the
knowledge about dementia among the
general public and health care providers.
This can be achieved by providing
appropriate training to the health care
providers such as nurses, physicians,
geriatricians, etc. In addition,
communication with patient and their care
givers are also important to encourage
understanding about the disease, its
progression, services available and other
resources. Government and private sectors
also need to share responsibility in order to
promote healthy ageing.
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Corresponding Author: Azlina Wati Nikmat, PhD student, Department of Psychiatry, Faculty of
Medicine, Dentistry and Health Sciences, University of Melbourne, 3100 Melbourne, Australia.
Email: azlinawatinikmat@gmail.com
Received: 13 January 2011 Accepted: 18 February 2011
... Indeed, various factors contributed to this relative neglect of dementia research, including the dearth of dementia training programs, research centers, and other support services, such as research registries, brain banks, and appropriate neuroimaging experience [31]. In Malaysia, Nikmat [33] found that the main issues and challenges in dealing with dementia in Malaysia were awareness and stigma; and both awareness and stigma associated with an illness can affect how people respond to it [34]. Several previous studies had already reported that most people in Asian countries like Malaysia, tend to perceive dementia as a normal part of aging instead of a specific condition that needs to be treated [35][36][37]. ...
... These research topics on dementia have often been neglected previously because of a lack of researchers in this area in Malaysia, and is also not regarded as a research area of high priority among the Malaysian geriatricians and gerontologists, and their researchers alike. Apart from the above, there are several highly valid concerns with the ability of local healthcare providers in providing quality health and social care to support persons with dementia in Malaysia [33]. For example, there is a widespread lack of psychiatric support available for persons with dementia in Malaysia, particularly those who live in rural areas [33]. ...
... Apart from the above, there are several highly valid concerns with the ability of local healthcare providers in providing quality health and social care to support persons with dementia in Malaysia [33]. For example, there is a widespread lack of psychiatric support available for persons with dementia in Malaysia, particularly those who live in rural areas [33]. This raises a major concern with both the public and social policies pertaining to the provision of optimal health care and social support services to persons with dementia within Malaysia. ...
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  • Apr 2022
Background Malaysia will become an ageing nation by 2030; however, there is scarce published information about the outlook of published research literature on the older adults population with dementia in Malaysia. Hence, this scoping review is conducted to obtain an overview of research studies published in this area. Methods Articles containing relevant keywords were searched in PubMed, Embase and ScienceDirect electronic databases. Full-texts of relevant studies were retrieved and categorized into themes and subthemes adapted from Aging and Social Change Research Network. Results A total of 1116 studies were retrieved and after discarding duplicates and irrelevant studies, 47 studies were included. Analysis of the 47 collated studies successfully categorized approximately 74% of reviewed studies into the Medical Perspectives, followed by roughly 18% grouped into the Social and Cultural Perspectives, and around 8% sorted into the Public Policy and Public Perspectives theme. In addition, 16 out of 31 subthemes spanning all four major themes were identified as potential research gaps on dementia in the older adults population in Malaysia. Conclusions This scoping review provides an insight into the existing published literature on dementia in the older adults population in Malaysia. In addition, research communities will be able to better understand our needs in this topic, enabling the prioritization of research that aligns with identified gaps and priorities.
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... It could be a factor that drives individuals with Dementia (PLWD) to seek medical treatment and intervention [15]. The misconception that dementia is a normal aspect of aging rather than a condition that must be treated is a key reason for the lack of awareness of dementia [16]. Another common misconception is the lack of knowledge on risk factors for developing dementia and the role of prevention [15]. ...
... Therefore, the initial steps in addressing the problem of dementia are to create awareness and improve the general public knowledge on dementia detection and management. Few earlier studies cited poor awareness of dementia within Malaysian communities [16]. However, no specific research has been done to assess the awareness of dementia among patients at risk. ...
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  • Aug 2023
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Background: The number of people living with dementia in Malaysia is expected to increase with the nation's growing elderly population and increased lifespan. The lack of public awareness of dementia is partly compounded by low personal health literacy, while scarce research on local patient awareness further impacts the execution of optimised healthcare services in Malaysia. Patients with chronic disease have an elevated risk of developing mild cognitive impairment (MCI). This study aimed to assess the level of awareness of basic knowledge on dementia among the elderly, especially those at risk of developing mild cognitive impairment and its associated factors. Methods: A total of 207 elderly patients aged 60 years and above with chronic diseases attending a university-based primary care clinic were recruited via a systematic randomised sampling method from the clinic patient attendance registry. Respondents were assessed using self-administered online questionnaires distributed via mobile devices. The questionnaire assessed awareness, i.e. ability to correctly answer a self-reported questionnaire on basic dementia knowledge; (adapted from Northern Ireland Life and Times Survey 2010), risk of MCI; (using Towards Useful Aging (TUA)-WELLNESS screening questionnaire) and help-seeking behaviour. Bivariate analysis was used to determine factors associated with dementia awareness. Results: The response rate was 77.1%, with the majority of participants were females, Chinese and had secondary school education. 39.1% of participants were categorised as high risk of developing MCI. The majority (92.8%) had low dementia awareness and had never shared their concerns regarding dementia (93.2%) nor had any discussion (87.0%) on cognitive impairment with their physicians. Three factors had an association with total dementia awareness score, i.e., younger age group, higher risk of MCI and presence of cardiovascular diseases have significantly lower awareness score (p < 0.05). Conclusion: Awareness of dementia is low among elderly patients with potentially high risk of developing MCI. Efforts to improve awareness on dementia should focus on primary care doctors engaging with at-risk elderly patients to initiate discussion regarding dementia risk while managing modifiable risk factors i.e. hypertension control, diabetes, dyslipidaemia and obesity.
View
... Interestingly, one review from 2011 revealed the importance of acknowledging dementia management issues and improving the services for patients. The review also suggested where the efforts should be made by the government and private sectors to promote healthy aging in Malaysia [14]. ...
... In this study, the NGOs were found to be actively involved in the welfare and support provision for the elderly, often trying to coordinate services themselves. The community support services in palliative home cares and daycare centres were already set up in large cities but less so outside of Selangor and Kuala Lumpur [14]. The interesting relationship between sub-themes of "awareness on the availability" of the care services and resources and the "actual and perceived lack of evidence" with the inadequacy information on how to "access for care service" in this study revealed that people did not really know how to access a service, even if they knew it existed, and sometimes, they did not know services were available. ...
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... There was a general stigma that existed within the community when seeking mental health treatment in healthcare facilities. All of which could have created a barrier for older patients seeking treatment in healthcare facilities [38]. Past studies also suggest old age poverty is strongly linked with cognitive impairment. ...
... A cross-sectional study conducted in a northern state of Peninsular Malaysia found that prevalence of depression among older adults living in poverty was 19.2 %. In fact, those whom were poor were 2.7 times likely to have severe depression compared to those who were not poor (38). The low prevalence of depression risk among Malays could be attributed to their religious practices. ...
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  • Sep 2021
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... As the frontliners of this crisis, many PCDs recognize the need to provide dementia care effectively but feel underprepared and inadequately trained [15]. PCDs have been found to have barriers in managing dementia due to the gaps in their knowledge, skills, attitudes, and resources in dementia care [12,[16][17][18][19]. A United Kingdom (UK) study highlighted that one-third of general practitioners expressed limited confidence in their diagnostic skills, whilst two-thirds lacked confidence in managing behavioral and other problems related to dementia [20]. ...
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Article
Full-text available
Primary care doctors (PCDs) play an important role in the early diagnosis and management of dementia. This study aimed to determine the knowledge, attitude, and confidence in managing dementia among PCDs in Malaysia. It also aimed to determine the factors associated with higher confidence levels in dementia management. An online-based cross-sectional study using Google FormsTM was performed. Sociodemographic and work-related data were collected, and Dementia Knowledge among General Practitioners & General Practitioners Attitude and Confidence Scale for Dementia questionnaires were utilized to assess the knowledge, attitude, and confidence scores. Multiple linear regression was conducted to determine the association between sociodemographic factors, knowledge, and attitude with the confidence in dementia management score. A total of 239 PCDs participated, with the majority being female (72.4%) and Malay (64.4%) and working in public primary care clinics (67.4%). The mean (±SD) score for confidence was 2.96 (±0.76). Among the factors associated with higher confidence levels in managing dementia were higher dementia knowledge scores, higher attitude towards dementia scores, prior dementia education, and the availability of nearby referral services for dementia. Malaysian PCDs’ confidence in dementia management was comparable to the PCDs of other countries. Strategies addressing these factors should be implemented to improve the confidence of PCDs in managing dementia.
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... The idea of becoming wiser as one grows older may be difficult for some people to accept because it is normal in Malaysia to consider aging as a time when one loses his/her cognitive function and develops dementia. 25) Older Malaysian adults who stay with their children may also feel they have lost their importance by becoming dependent 21,26) and thus lose their wisdom in decision-making and perhaps their role as the head of the family. ...
A Malay Version of the Attitude to Ageing Questionnaire: Its Adaptation, Validation and Reliability in the Malaysian Older Adult Population
Article
Full-text available
  • Jul 2022
Background: The Attitude to Ageing Questionnaire (AAQ) was developed to assess perceptions of the aging process among older adults. The 24 items were framed into three factors. This study aimed to translate the AAQ from English to the Malay language (AAQ-M) and determine its factorial structure and validity in a Malaysian population. Methods: The original AAQ underwent a standard translation process, as well as content and face validation, to produce the AAQ-M. The construct validity of the AAQ-M was then assessed in 254 older adults aged 60 years and above attending a public primary care clinic in Seremban, Malaysia. Results: Exploratory factor analysis showed a three-factor model for the AAQ-M with acceptable reliability and Cronbach α values ranging from 0.71 to 0.82 for each factor. A total of five items were omitted for poor factor loadings (<0.32) or because they did not conceptually fit into the factor they were loaded onto. Of the final 19 AAQ-M items, seven were physical change factors, eight were psychosocial loss factors, and four were psychological growth factors. This three-factor model explained 37.9% of the total variance. Conclusion: The AAQ-M version confirmed that the three-factor model, namely physical change, psychosocial loss, and psychological growth, was similar to that of the original AAQ. The AAQ-M is a valid and reliable instrument for assessing the three aspects of attitudes toward aging in the Malaysian older adult population.
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... There was a general stigma that existed within the community when seeking mental health treatment in healthcare facilities. All of which could have created a barrier for older patients seeking treatment in healthcare facilities (33). Past studies also suggest old age poverty is strongly linked with cognitive impairment. ...
The Intersectional Effects of Ethnicity/Race and Poverty on Health Among Community-Dwelling Older Adults Within Multi-Ethnic Asian Populace: A Population-Based Study
Preprint
Full-text available
  • Jan 2021
Background: Ethnicity/race and poverty are among determinants of health in older persons. However, studies involving intersectional effects of ethnicity/race and poverty on health of older adults within multi-ethnic Asian populace is limited. Hence, this study aimed to examine the intersectional effects of ethnicity/race and poverty on cognitive function, depressive symptoms, and multimorbidity among community-dwelling older adults in Malaysia. Methods: Data were obtained from the first wave of a Peninsular Malaysia national survey - “Identifying Psychosocial and Identifying Economic Risk Factor of Cognitive Impairment among Elderly”. Multivariate logistic regression was used to identify intersectional effects and associations between control variables and health outcomes. A comparison between Malay and non-Malay older adults within the same poverty group, as well as hardcore poor and non-hardcore poor older people within the same ethnicity groups, were conducted to understand the intersectional effects of ethnicity/race and poverty on health. Results: Prevalence of cognitive impairment was highest among the hardcore poor group while risk of depression and multimorbidity were highest among non-Malays. Malay older adults were more prone to developing cognitive impairment regardless of their poverty status whereas non-Malay from the hardcore poor group had higher tendency for risk of depression and multimorbidity. Hardcore poor older adults residing alone were associated with higher depressive symptoms. But fewer older adults currently working reported multimorbidity. Conclusions: Health outcomes of Malaysian older adults differ according to ethnicity and socioeconomic status. Given the importance of demographic characteristics on health outcomes, design of interventions targeting older adults within multi-ethnic settings must address specific characteristics, especially that of ethnicity and sociodemographic status so as to fulfil their needs. Several implications for future practice were discussed.
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A Qualitative Study on Formal and Informal Carers' Perceptions of Dementia Care Provision and Management in Malaysia
Article
Full-text available
  • Jul 2021
Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all. Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis. Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management. Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.
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Prevalence of dementia and quality of life of caregivers of people living with dementia in M alaysia
Article
  • Dec 2020
  • GERIATR GERONTOL INT
Aim Dementia is the major cause of disability among older persons and leading physical and psychological sequelae for both the person living with dementia (PLwD) and their caregivers. The aim of this study was to determine the prevalence of dementia in Malaysia and identify the factors influencing quality of life (QoL) of caregivers of PLwD. Methods A nationwide survey was conducted among individuals aged ≥60 years. Cognition was assessed with the Identification and Intervention for Dementia in Elderly Africans (IDEA) tool. QoL of older caregivers was assessed using the Control, Autonomy, Self‐Realization and Pleasure (CASP‐19) questionnaire. Results The prevalence of dementia among older adults aged ≥60 years in Malaysia was found to be 8.5%. The prevalence was found to be higher among females, those with no formal education and those in rural areas in Malaysia. The mean QoL of family caregivers of PLwD was significantly lower than the caregivers of older adults without dementia were (P < 0.001). Multivariable linear regression analysis on the subpopulation of PLwD showed that inability to carry out activities of daily living among PLwD (P = 0.014) and low to fair social support for the caregivers (P < 0.001) were negatively associated with QoL of caregivers of PLwD. Conclusions The high prevalence of dementia among older adults in Malaysia emphasizes the need for affirmative action in Malaysia. The functional capacity of the PLwD and social support determines the QoL of caregivers of PLwD in Malaysia. Thus, the community as a whole needs to provide support to PLwD and their caregivers. Geriatr Gerontol Int 2020; 20: 16–20.
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Older Adults' Awareness of Community Health and Support Services for Dementia Care
Article
Full-text available
  • Dec 2009
RÉSUMÉ L’article examine où les personne agées peuvent chercher l’aide pour prendre soin d’un parent avec démence et les facteurs associés à leur identification des services de santé et de soutien communautaires comme des sources d’aide. Les auteurs menées des entrevues téléphoniques, à l’aide de numérotation de chiffres aléatoires, de 1,152 adultes âgés de 50 et plus dans la ville de Hamilton. À déterminer les sources de soutien, plus 37 pour cent des répondants a identifié leur médecin, 33 pour cent a identifié un soutien informel comme la famille et voisins et 31 pour cent a identifié des services de santé maison. Seulement 18 pour cent a identifié des services de soutien communautaires. Participants femmes ayant des niveaux plus élevés de scolarité étaient plus susceptibles d’identifier leur médecin comme une source de soutien. Savoir où trouver renseignements sur services de soutien communautaires était associée à une probabilité accrue de mentionnant des médecins et des services de santé maison comme sources d’aide.
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Attitudes and Perceptions Regarding Alzheimer's Disease in Greece
Article
Full-text available
  • Feb 2009
The Facing Dementia Survey was conducted across Europe to assess awareness and behaviors regarding Alzheimer's disease. A similar survey was undertaken in Greece. Interviews were conducted with the general public, primary caretakers, and physicians involved with Alzheimer's disease patients. Results indicated that the general public is not able to recognize the early symptoms of the disease and seek help resulting in a delay in the diagnosis. The principal cause was attributing the symptoms as part of the normal ageing process and ignorance regarding the disease. In addition, the survey indicated that only a small proportion of the physicians and the primary caretakers believed that there is an effective treatment for Alzheimer's disease but agreed on the goals of treatment. In addition there was a consensus among all respondents that the government should take a more active role as far as informing the public, supporting the caregivers, and treating the patients.
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Barriers to community support for the dementia carer: A qualitative study
Article
Full-text available
  • Jun 2000
To understand how carers of dementia sufferers gain access to community support and to determine potential barriers for carers. Qualitative study using semi-structured interviews of carers after an Aged Care Assessment Team intervention. Australian metropolitan Aged Care Assessment Team. 24 live-in carers of dementia sufferers. Carers' subjective experience of sources of stress in their care of the dementia sufferer focusing on interactions with the general practitioner and formal community support agencies. Most carers suffered high levels of stress, mainly due to behaviour disturbances and care needs of the dementia sufferers. Problems with health care agencies were also reported by a majority of the carers to be contributors to their distress. General practitioners were perceived to have referred dementia sufferers late for community care, despite the carer having experienced difficulties for a considerable time period. Carers also complained that too little information was provided about the diagnosis of dementia, how to deal with problem behaviours and how to access support services before and after the assessment procedure. Problems with the interaction between the carer and the general practitioner appear to be important in delaying access to appropriate support and information. Earlier recognition of carers' problems, the provision of better education and earlier access to support services may lessen the degree of stress experienced by carers.
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Mental Illness Beliefs in Malaysia: Ethnic and Intergenerational Comparisons
Article
Full-text available
Two groups of college students in Malaysia, ethnic Malay and ethnic Chinese, completed a mental illness attribution and help seeking questionnaire, and these responses were also compared with the responses of their mothers. As expected, ethnic Malays rated religious items, such as God and prayer, higher than the Chinese. However, both groups rated the social and psychological causes higher than religious, supernatural or physical causes. Contrary to our predictions, there were no intergenerational differences among either ethnic group. Medical pluralism was demonstrated, as a variety of apparently contradictory help seeking behaviors received quite high ratings including doctor/pharmacy, prayer, herbal medicine and traditional healers.
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Stigma and dementia East European and South Asian family carers negotiating stigma in the UK
Article
  • May 2006
This article draws on findings from a three-year project to develop and deliver culturally appropriate support group materials for South Asian and Eastern European family carers of relatives with dementia living in the UK. Analysis of interview and field note data revealed insights into how understandings of dementia in different cultural contexts can become operationalized through stigma processes and in turn influence the ways in which people with dementia and their family carers engage with formal and informal support.
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Stigma and Dementia: South Asian and Eastern European family carers negotiating stigma in two cultures
Article
No This article draws on findings from a three-year project to develop and deliver culturally appropriate support group materials for South Asian and Eastern European family carers of relatives with dementia living in the UK. Analysis of interview and field note data revealed insights into how understandings of dementia in different cultural contexts can become operationalized through stigma processes and in turn influence the ways in which people with dementia and their family carers engage with formal and informal support.
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Support for family caregivers: What do service providers say about accessibility, availability and affordability of services?
Article
This paper reports on a survey of providers of caregiver support services in Singapore (N = 36). The overall aim of the survey was to provide feedback to service planners and programme staff on the delivery of services to caregivers and opportunities for improvement. A questionnaire, comprising both closed and open-ended questions, was used to collect data. The results showed that most health and social service providers offer counselling, case management, caregiver assessment, financial assistance and information. A minority provide emergency, short-stay respite care and day care. About one in three provide transportation services, which featured as a barrier to service utilisation. Other barriers identified were time commitments, lack of awareness of services, cost of care, caregivers' sense of responsibility, lack of alternate care arrangements and distrust. The survey also characterises the hard-to-reach caregivers as homebound, illiterate, socially shy and isolated, of low income and poorly educated. Most service providers emphasise that financial support is necessary in order to improve the prospects of family caregivers.
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Cultural influences on the prevalence of common mental disorder, general practitioners' assessments and help-seeking among Punjabi and English people visiting their general practitioner
Article
  • Aug 2001
Culture influences symptom presentation and help-seeking and may influence the general practitioner's assessment. We recruited Punjabi and English GP attenders to a two-phase survey in London (UK) using the Amritsar Depression Inventory and the General Health Questionnaire as screening instruments. The Clinical Interview Schedule was the criterion measure. General practitioners completed Likert assessments. The second phase was completed by 209 Punjabi and 180 English subjects. The prevalence of common mental disorders was not influenced by culture. Punjabi cases more often had 'poor concentration and memory' and 'depressive ideas' but were not more likely to have somatic symptoms. General practitioners were more likely to assess Punjabis with common mental disorder as having 'physical and somatic' symptoms or 'sub-clinical disorders'. Punjabi cases with depressive ideas were less likely to be detected compared with English ones. In comparison to English men, English women were under-detected by Asian general practitioners. Help-seeking English subjects were more likely to be correctly identified as cases. The prevalence of common mental disorders and somatic symptoms does not differ across cultures. Among English subjects, general practitioners were more likely to identify correctly pure psychiatric illness and mixed pathology; but Punjabi subjects with common mental disorders were more often assessed as having 'sub-clinical disorders' and 'physical and somatic' disorders. English women were less well detected than English men. English help-seeking cases were more likely to be detected.
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