Dementia Sufferers- Lost Cause in Pakistan

KARACHI- A new research was launched by Health and Nutrition Development Society (HANDS), regarding people suffering from dementia in Pakistan. It lead towards the need for greater awareness of the disease, an effective support system and greater cultural understanding.

Led by the University of Southampton, a team of international researchers conducted a study, to identify peoples’ beliefs and attitude towards dementia and to develop policies to help the sufferers.

Principal Investigator Prof Asghar Zaidi, stated that, “Dementia is a global health priority, but progress towards its understanding and treatment in low and middle-income countries has been slow, despite rapidly ageing populations. We hope our report will inform policymakers in Pakistan and across South Asia – helping to improve the lives of people with the disease and their caregivers.”

Working in collaboration with Brighton and Sussex Medical School, The AGA Khan University and the charities Age International, HANDS and Alzheimer’s Pakistan, the researchers conducted a series of interviews with people living with dementia and their caregivers, and focus groups with members of the general public. They also carried out semi-structured interviews with key stakeholders, such as practitioners and policymakers.

One of the most striking findings in the report was the lack of awareness of dementia and its symptoms. Respondents attributed the disease to a range of factors, such as getting old, doing too much, stress, shock, social isolation and in more extreme cases, black magic. These misconceptions led to misunderstandings about care and prognosis. Perhaps, most concerning was a strong stigma associated with the disease, or generally with any other mental health problem. An important finding surfaced that,  dementia patients mentioned their loss of sense of time of day and how that impacted their ability to know when to pray. In addition, a loss of sense of orientation made it difficult to lay prayer mats correctly. Altogether, it was difficult for people with dementia to meet many societal expectations.

Some caregivers spoke of feeling isolated, with more women than men also expressing concern about how other duties had been affected, such as child caring, household tasks and their paid jobs. They also spoke of effects on their own health and feelings of frustration and guilt.

The report authors, highlight a number of important policy implications stemming from their research. Key recommendations included: developing a national campaign in Pakistan to raise awareness, highlighting symptoms and their progression, and how to seek help, more funding for affordable and accessible dementia specialist services, such as day care centers, hospital wards, and support groups. They further recommended to focus on help within home, as Pakistanis are more likely to accept home based care. Communication with religious leaders about dementia, both in terms of raising awareness and the acceptability to seek help, followed by exemption from religious duties and forming greater understanding about the disease, along with taking into account the cultural sensitivities.