Dementia awareness, beliefs and barriers among family caregivers in Pakistan

Abstract

OBJECTIVES: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: a) to determine whether culture and religion play a role in caregiving; b) to draw insights on how family caregivers cope, what barriers they face, and what help they would be willing to accept; and c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. METHODS: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35-80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. RESULTS: Five themes emerged: Knowledge & Awareness; Stigma; Importance of Religion and Duty to Care; Use of Day Care Centres and Home-help; and Barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers, and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatized, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. DISCUSSION: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services, and an emphasis on home-based care.

Dementia: need for studies in the new era

“…Mostly the caretakers is family members because health care specialist are only available through private channels accessible only by wealthy. 9 Overall, the basic economic rights of older people in our country are not well defined. Meanwhile, research conducted in Pakistan about dementia is very limited, which makes it even more difficult to understand this disease in our community.…”

Carer Empowerment Is Key to Reduce Dementia Care Inequalities in the Middle East

“…A stigma, or the process of stigmatization, refers to a sense of shaming or externally induced embarrassment regarding some characteristic [8]. Broad social and cultural shaming of mental health issues can reduce help-seeking behaviors and may cause embarrassment to adults with dementia, their families, and carers [4]. The prevailing culture in the Middle East is collective in nature, with an emphasis on community and family opinions compared to individual viewpoints.…”

“…These socio-political barriers can lead to challenges with regard to engaging with individuals living with dementia and their carers [3]. Much of the population resides in rural locations with limited access to telecommunications [4]. Physical contact is needed to reach carers in these settings, and this can present a logistical challenge when conducting research related to dementia [3,4].…”

“…Much of the population resides in rural locations with limited access to telecommunications [4]. Physical contact is needed to reach carers in these settings, and this can present a logistical challenge when conducting research related to dementia [3,4]. Environmental factors, such as extreme heat and undeveloped roads, can reduce the ability to contact carers in many parts of the region [4].…”

“…Physical contact is needed to reach carers in these settings, and this can present a logistical challenge when conducting research related to dementia [3,4]. Environmental factors, such as extreme heat and undeveloped roads, can reduce the ability to contact carers in many parts of the region [4]. There appears to be an awareness deficit associated with dementia in Middle Eastern countries, and a need does exist to consistently and accurately evaluate trends in this mental health issue over time [1].…”