Cost and burden of informal caregiving of dependent older people in a rural Indian community

Brinda, Ethel Mary; Rajkumar, Anto P.; Enemark, Ulrika; Attermann, Jørn; Jacob, K. S.

doi:10.1186/1472-6963-14-207

Cited by 76 publications

(75 citation statements)

References 46 publications

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“…About one third patients in our survey reported to have paid help available however as this was a self-reported, non-descriptive questionnaire we are not able to comment on the type of help however having maids for domestic help in Karachi and other urban areas is very common and available at low wages; it is highly likely that these are unprofessional and untrained domestic workers. This scenario may be completely different in low socio-economic and rural areas of Pakistan, as also reported in a study in rural India with 0% of people having paid help available [27]. These are informal and untrained caregivers and have limited understanding of dementia symptoms.…”

Section: Variablesmentioning

confidence: 94%

Dementia Survey amongst Attendees of a Dementia Awareness Event in Karachi, Pakistan

Khan¹

2017

AND

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2016, over 47 million people worldwide have dementia and this number is expected to rise to more than 131 million by 2050 [1]. In 2015 58% of the total dementia population is estimated to reside in Low and Middle Income Countries (LMICs) which is expected to rise to 63% by 2030 and 68% by 2050 [2]. Dementia and related issues in LMICs are different than in the West including assessment, diagnosis, awareness, caregiver characteristics, resources, and policy and strategies. Therefore research done in the West may not be applicable to LMICs in all aspects and contextualized research is needed for tailored solutions in such settings [3].Pakistan is a low middle income country in South East Asia with a rapidly aging population. It is currently the sixth most populous country in the world and is expected to become the third most populous by 2050 [4,5] and 10% of the country's total population is estimated to be over 60 years of age [6]. Islam is the religion of the state with 97 % of the population being Muslim [7], with a very low literacy rate of 56% and low GDP per capita [8]. Among several factors identified as contributors to people's understanding of different medical conditions, religious and cultural beliefs, level of education and living arrangements are also important ones that play a role in explanatory models of disease symptomatology [9] and outcomes [10]. In Pakistan, joint family system prevails and people with dementia are mostly cared for at home by family members and informal caregivers. A qualitative study conducted in Lahore, Pakistan interviewed 8 dementia caregivers to explore thinking patterns, physical health; identified maladaptive cognitive patterns fatigue and sleep disturbances as causes of caregiver distress [11]. Caregiver distress is also often associated with type, severity, and frequency of dementia symptoms [12]. Caregiver characteristics and relationship with patient may also differ in different geographical regions, affecting the dynamics, quality of care and care burden [11]. In Pakistan, caregiver role is usually assigned to women [13] who may be spouses, daughters or daughter in laws of the affected person. Due to the unique characteristics of this society and dearth of dementia related research, it is important to study people's knowledge about dementia, cultural beliefs, most common and difficult to manage symptoms and resources available.We designed a 15 item questionnaire survey to be filled out by the participants of a dementia awareness program in Karachi to study patients' knowledge, care arrangement and caregiver characteristics. MethodsAga Khan University Hospital (AKUH) is a private teaching hospital located in a densely populated area of Karachi. The hospital is considered to be one of the most sophisticated in the country and regularly organizes CME sessions, awareness events and capacity building exercises for trainees, physicians and general public in the city and the country. The hospital has the only trained neuropsychiatrist (Khan Q) in the country. As a part of ...

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Section: Variablesmentioning

confidence: 94%

Dementia Survey amongst Attendees of a Dementia Awareness Event in Karachi, Pakistan

Khan¹

2017

AND

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“…In support of the literature , older caregivers, in addition to caring for elderly individuals, were found to be significantly associated with weaker enabling variables, including access to health care, income and family support. Additionally, in support of the previous findings , they were found to be significantly associated with lower healthy life indicators, including sleep quality, energy level, concentration and decision‐making.…”

Section: Discussionmentioning

confidence: 54%

Illustration of informal caregiving within Saudi society: demography, scope of care and enabling arrangements

Alrashed

2016

Scandinavian Caring Sciences

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Although informal caregiving is a vital element in the process of supporting individuals with dependency, it is unrecognised most of the time, particularly by caregivers themselves. In Saudi Arabia, little attention has been devoted to informal caregivers; therefore, scarce coverage of this topic is obvious within the literature. This descriptive cross-sectional study was carried to explore informal caregiving within Saudi society by (i) describing informal caregivers and their care recipients and (ii) measuring the scope of care and enabling arrangements in the lives of informal caregivers. Numerical measures of frequency distribution were used to describe the participants and the correlate of demography among 341 female primary caregivers of the elderly (40%), individuals with disabilities (10%) or/and children aged five or younger (51%). Inferential statistics were used to test for significant associations among study variables. The majority of the participants were married with children and were middle-aged. However, the majority of care recipients were living with their caregivers; in addition, they were primarily females cared for by a mother or, less often, by a daughter (in-law). Enabling arrangements were on a moderate level, mainly in healthcare access, financial resources and family support, with lower signs detected in the quality of sleep indicator. These arrangements were significantly associated with caregiver age, education, career status and source of assistance. In conclusion, the statistics revealed by this survey indicated certain challenges that have been encountered by informal caregivers, primarily involving financial and social support. More coverage within the formal system of childcare must be provided to facilitate healthier childhoods. The long-term needs of individuals with dependency must be considered in the planning process of healthcare services, as well, remembering the needs and expectations of informal caregivers.

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“…Brinda et al found that 63.5% of caregivers in their study were unhappy with the function of giving care. 25 Providing care affects the physical, emotional of caregivers. Thus, declining wellbeing of caregivers can lead to be unhappiness.…”

Section: Discussionmentioning

confidence: 99%

Life Satisfaction and Care Burden of Caregivers Who Provide Care at Home to Elderly Patients and the Inflfluencing Factors

Işık¹,

Erci²

2018

Turkiye Klinikleri J Nurs Sci

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A AB BS S T TR RA AC CT T O Ob bj je ec ct ti iv ve e: : This study aimed to determine the relationship between life satisfaction and care burden in those who provide care to impaired elderly individuals at home and the factors that affect that relationship. M Ma at te er ri ia al l a an nd d M Me et th ho od ds s: : This relational descriptive study was conducted between July 2012 and June 2013. The study population comprised 200 caregivers who provided care to elderly individuals (aged 65 years or older) registered with the Home Care Center of Adiyaman University Training and Research Hospital. In total, 160 caregivers participated in this study. Data were collected using a questionnaire prepared by the investigator that included demographic information, the Burden Interview and the Satisfaction with Life Scale. Data were evaluated using the Statistical Program for Social Sciences (SPSS) 16.0 package program. Statistical analysis was used to number, percentage, t-test, ANOVA and correlation. R Re es su ul lt ts s: : The majority of caregivers were women and married. Overall, the caregivers' care burden and life satisfaction were determined at moderate levels (46.45±15.40 score). Factors such as sex, income status and care satisfaction affected care burden, whereas education level and income status affected life satisfaction. A negative correlation was found between care burden and life satisfaction of the caregivers. C Co on nc cl lu us si io on n: : The results of this study demonstrated that the burden of care decreases the life satisfaction. To decrease care burden and increase the life satisfaction of caregivers, national policies and training programmes should be developed.

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Cost and burden of informal caregiving of dependent older people in a rural Indian community

Cited by 76 publications

References 46 publications

Dementia Survey amongst Attendees of a Dementia Awareness Event in Karachi, Pakistan

Dementia Survey amongst Attendees of a Dementia Awareness Event in Karachi, Pakistan

Illustration of informal caregiving within Saudi society: demography, scope of care and enabling arrangements

Life Satisfaction and Care Burden of Caregivers Who Provide Care at Home to Elderly Patients and the Inflfluencing Factors

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