This study, the first of its kind, is part of Age International’s effort to understand how best to respond to the needs of older people living with dementia, and their carers in low-income countries.

 

Misconceptions about dementia

 

The research found that misconceptions and stigma about dementia are prevalent in Pakistan. Dementia and its symptoms are often attributed to doing too much, stress, shock and social isolation or as an inevitable part of getting older. These misconceptions are causing people to delay seeking a diagnosis as they assume nothing that can be done.

This is worrying as an early diagnosis is important for giving people living with dementia and their families the best care. For although there is currently no cure for dementia, there are actions that can be taken to improve patients’ quality of life and that of their caregivers.

 

Care and support

 

People living with dementia often experience memory loss and difficulties with thinking, problem solving or language. For a person with dementia, these symptoms are severe enough to affect daily life.

There is currently no government policy in Pakistan to provide specialist health care for people living with dementia, relying instead on family caregivers playing a central role.

Many carers reported feeling trapped in their home, socially isolated and experiencing stress. They expressed concern about how other areas of their life have been affected, such as child caring, household tasks and their jobs. They also spoke of effects on their own health and feelings of frustration and guilt.

The carers suggested better training for healthcare staff, day centres, more online support and support groups, and an awareness campaign of the condition would help them feel more supported and able to manage.

 

Impact on religious practice

 

In Pakistan, the research found an expectation that older people will dedicate more of their time to religious activities as they get nearer to the end of their life. People living with dementia can find it difficult to meet these expectations and as Muslims they can find this an additional worry.

People living with dementia often feel disorientated about the time of day, which means they struggle with knowing when to pray. The timing of daily prayers is important in Islam and this symptom can be challenging for Muslim patients and their family caregivers. In addition, a loss of sense of orientation can make it difficult for them to lay their prayer mats correctly.  

One carer talked about how her relative tried to pray in the bathroom and how she had to explain that this was not a suitable place to pray. This difficulty in fulfilling religious duties often causes further distress for both the person with dementia and their caregiver.

 

South Asian families in the UK

 

The research also identified cultural parallels with the experience of South Asian communities in the UK, who are less likely to be aware of dementia and tend to receive a diagnosis later than people from white British communities. This highlights the need to strengthen understanding about dementia, fight stigma and reduce barriers to accessing services. Changing attitudes towards dementia within this community is a key step to improving how people seek help.

 

What needs to change

 

The research makes a clear call for increasing awareness of dementia, its symptoms and causes, so that people feel able to seek a diagnosis and get the support they, and their carers need.

More support services in Pakistan would provide people living with dementia and carers with the help they need to improve their wellbeing.

Learn more

 

For Age International, with our concern to protect and promote the rights of older people in low-income countries, this research provides valuable lessons that can help improve later life across many contexts.

The report, Understanding, Beliefs and Treatment of Dementia in Pakistan: Interim Findings, can be accessed here.

The research was funded by Age International and carried out by Dr Asghar Zaidi with support from University of Southampton and Brighton and Sussex Medical School. The work was supported in Pakistan, by HelpAge Pakistan, Alzheimer’s Pakistan, Aga Khan University and HANDs.

Moriarty, J Sharif, N. and Robinson J. (2011) Black and minority ethnic people with dementia and their access to support and services. Research Briefing 35, London: Social Care Institute for Excellence.