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 ...