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In 2023, Pakistanis aged 65 and above accounted for 4.19 percent of the country’s total population. As people age, the burden of disease, particularly neurodegenerative diseases of the brain such as Alzheimer’s disease and dementia, increases. According to some estimates, around 200,000 people in Pakistan are suffering from dementia. It is possible that the actual number is much higher, as under-reporting is a major challenge.
Caring for people with dementia is complex and multifaceted. It can take physical, emotional and financial toll.
There is a lack of public awareness regarding dementia and Alzheimer’s. They are often considered a part of aging. We now know that dementia is not always age-defined, and can have a slow progressive course that can place a heavy burden on caregivers.
Socioeconomic factors also play a role in caring for people with dementia. Although financially stable families can hire caregivers and nurses to care for the patient, low and middle income families have to take care of their family members themselves due to lack of resources. .
Emotional stress transcends socioeconomic class and needs to be taken seriously. Dementia care is difficult because of the emotional drain of watching a loved one become a stranger before your eyes. Personality changes are a part of degenerative diseases like Alzheimer’s. These can be devastating for caregivers. Delusions are common. Patients may think that people are stealing from them or that their spouse is poisoning them, etc. These behaviors can be dangerous for patients and cause great stress for caregivers, especially due to lack of information about the disease process, and how it can be prevented. such behavior.
Not only are resources not available, dementia awareness campaigns in Pakistan are also rare. Caregivers often struggle to navigate the complexity of the disease and how to manage it all on their own.
It is important to understand how caregiving stress can cause poor physical and mental health and lead to elder abuse if not recognized early. We know that stress can exacerbate existing health conditions and trigger new concerns. Stress also lowers immunity, and caregivers are more prone to infections. The emotional trauma of dealing with a loved one’s gradual deterioration needs to be dealt with independently, as it can otherwise lead to depression. There are not many options available for mental health services, and many people may be reluctant to seek help because of stigma.
Caregiving stress can cause poor physical and mental health. If not identified early, it can also lead to elder abuse.
At the systems level, change is needed with a focus on senior health and disease prevention. Awareness campaigns targeting caregiving stress and dementia support are much needed. There should be funding for day care and recreation centers for people with dementia. That way, families can get some comfort, and trained personnel will take care of their loved ones. Union councils should have senior centers where the elderly can gather, and their health and social needs can be taken care of by a multidisciplinary team of doctors and social workers. These centers can also be places for awareness campaigns.
It is a framework that will help improve the health and well-being of the elderly and reduce the burden on caregivers. Advocating for and implementing these changes under the current system will be difficult.
Meanwhile, we can continue to raise awareness by informally breaking the silence.
Sharing information about behavioral changes in patients can be helpful, because in some situations, non-confrontation and redirection work better than medication.
Informal support groups such as neighborhood clubs can provide emotional support to people coping with caregiving burdens.
Music therapy and art therapy are particularly beneficial for people with dementia and caregivers, as participation in the activities helps strengthen relationships and reduce caregiver stress. can
Mental health and wellness should also be a focus for caregivers who may seek help from therapists specializing in memory care or loss counseling.
As a therapist, I advise caregivers to always take care of themselves.
It’s a bumpy road that people with dementia and their caregivers struggle on without a hitch. This is a global phenomenon; Perhaps more crises in the Global South due to lack of resources and lack of awareness of the gravity of the situation. Dementia and Alzheimer’s disease are debilitating progressive diseases with no cure, and the burden of caregiving is constant regardless of socioeconomic status. Raising awareness and sharing stories will help spread the word, and potentially lead to advocacy.
The author is a US-based ophthalmologist who has held positions at the University of Michigan, Indiana University, University of Wisconsin and New York University. She currently works at the University of Chicago Health System. He can be contacted at amnabuttar@gmail.com, and on Instagram @dramnabuttar.
