n 2023, Pakistanis aged 65 and older were 4.19 per cent of the country’s total population. As people age, the disease burden, especially that of neurodegenerative diseases of the brain such as Alzheimer’s disease and dementia, grows. According to some estimates around 200,000 persons have dementia in Pakistan. It is possible that the actual number is much higher, as underreporting is a major challenge.

Caregiving for people with dementia is complex and multilayered. It can incur physical, emotional and financial tolls.

There is a lack of public awareness regarding dementia and Alzheimer’s. They are often perceived as a part of ageing. We now know that dementia is not always age-determined, and can have a slow progressive course that can cause a tremendous burden upon caregivers.

Socioeconomic factors also have a role in the care of persons with dementia. While financially stable households can hire caregivers and nurses to provide care for the patient, lower-and middle-income households have to care for their family members on their own due to lack of resources.

Emotional stressors transcend socioeconomic class and need to be taken seriously. Caregiving for dementia is harder due to the emotional drain of seeing your loved one becoming a stranger in front of your eyes. Personality changes are a part of degenerative diseases such as Alzheimer’s. These can be devastating for the carers. Delusions are common. Patients can think people are stealing from them or that their spouse is poisoning them etc. These behaviours can be dangerous for patients and can cause a great deal of stress for caregivers especially due to a lack of knowledge about the disease process, and how to mitigate such behaviours.

Not only are there no resources available, but there are very few dementia awareness campaigns in Pakistan. Caregivers mostly struggle to navigate the complexity of this disease and how to handle it all on their own.

It is important to understand how caregiving-related stress can cause poor physical and mental health and lead to elder abuse if not recognised early. We know that stress can exacerbate existing health conditions and lead to the development of new concerns. Stress also lowers immunity, and caregivers are more prone to infections. The emotional trauma of dealing with the slow deterioration of your loved one needs to be dealt with independently, as this could otherwise lead to depression. There are not many options available for mental health services, and most people may be reluctant to seek help due to stigma.

Caregiving-related stress can cause poor physical and mental health. If not recognised early, it can also lead to elder abuse.

At the systems level, there needs to be a change with a focus on health for seniors and disease prevention. Awareness campaigns targeting caregiving-related stress and dementia support are much needed. There should be funding for daycare and recreation centres for people with dementia. This way, families could get some reprieve, and their loved ones would be taken care of by trained personnel. There should be senior centres in union councils where seniors can gather, and their health and social needs can be taken care of by a multidisciplinary team of doctors and social workers. These centres can also be places for awareness campaigns.

This is a framework that will help improve the health and well-being of seniors and mitigate the burden of caregivers. These changes would be difficult to advocate for and implement under the current system.

Meanwhile, we can continue to increase awareness by breaking the silence informally.

Exchanging information regarding behavioural changes in patients can be helpful, as in certain situations, non-confrontation and redirection work much better than medication.

Informal support groups like neighbourhood clubs can provide emotional support to people dealing with the burden of caregiving.

Music therapy and art therapy are especially beneficial for persons with dementia and caregivers, as participating in activities helps strengthen bonds and can help reduce caregivers’ stress.

Mental health and well-being should also remain a focus for caregivers who can seek help from therapists specialising in memory care or counselling for loss.

As a physician, I recommend caregivers to always take care of themselves.

It is a rough road that persons with dementia and their caregivers struggle on without any reprieve. This is a worldwide phenomenon; perhaps more of a crisis in the Global South due to a lack of resources and lack of knowledge regarding the gravity of the situation. Dementia and Alzheimer’s disease are debilitating progressive diseases for which there is no cure, and the burden of caregiving is relentless regardless of socioeconomic status. Increasing awareness and sharing stories will help spread the word, and possibly lead to advocacy.

The writer is a US-based geriatrician who has held positions at University of Michigan, Indiana University, University of Wisconsin and New York University. She is currently working at the University of Chicago health system. She can be reached at amnabuttar@gmail.com, and on Instagram @dramnabuttar