Alzheimer’s Day: Understanding caregivers’ burden and ways to reduce it | The Financial Express

Alzheimer’s Day: Understanding caregivers’ burden and ways to reduce it

The lack of awareness and structured care systems for Alzheimer’s care in India puts the onus of care on the family and the informal sector.

Alzheimer’s Day: Understanding caregivers’ burden and ways to reduce it
Reports suggest that most people with Alzheimer’s and other dementia-related diagnoses receive care at home. (File)

By Dr. Shabnam Mir

Alzheimer’s is a type of dementia, which negatively impacts memory, thinking, behaviour and other cognitive aspects of a person. According to the WHO data, this neuro-cognitive disorder is the commonest form of dementia, accounting to about 70% of the total reported cases worldwide. With the declining mortality rate, the proportion of elderly population is increasing globally, and consequently, the number of people living with dementia is also expected to rise. A report by the Alzheimer’s and Related Disorders Society of India (ARDSI) states that the number of Indians with Alzheimer’s is projected to reach 7.6 million by 2030. This alarming issue needs immediate attention.

No forms of dementia can be completely cured. However, with proper care and symptom management, the deteriorating effects can be managed, resulting in delayed progression, enabling patients to lead relatively normal lives. It must be realised that the time of detection plays a crucial role in treating dementia patients and the sooner it is detected, the better it is for the treatment. Treatment should start as soon as the diagnosis has been confirmed.

The lack of awareness and structured care systems for Alzheimer’s care in India puts the onus of care on the family and the informal sector. While most families and immediate caregivers step up, they are often ill-equipped to handle the differentiated care Alzheimer’s patients may require. For instance, Alzheimer’s patients need care that engages all five senses through sustained exercise. Having to figure out the logistics and execute such care can put a lot of pressure on the untrained caregiver.

Reports suggest that most people with Alzheimer’s and other dementia-related diagnoses receive care at home. The caregivers, who are generally family members of the patient, dedicate a significant amount of time daily to unpaid care. When a person suffers from a degenerative neurocognitive disease, they must be constantly comforted and given verbal and physical reassurance. This often adds to the already busy caregivers, adding to the caregiving burden. It is also established that family caregivers are at a greater risk of suffering from anxiety, depression, and poorer quality of life themselves. They may even suffer adverse emotional consequences after providing care for an Alzheimer’s patient.

Eventually, people with dementia may need 24-hour monitoring, a safe environment, and a caregiver who can control their aggressive or agitated behaviour. This may be difficult for an informal caregiver, and even more detrimental for the patient, as the caregiver may not be able to meet the care needs due to lack of training. Therefore, it’s important to share a caregiver’s burden and to do so, India needs to strengthen its senior care network with a specialised focus on standardised Memory Care for seniors.

In our efforts to create specialised care for Alzheimer’s and other dementia patients, we have identified six principles of wellness that can ensure quality care.

These are:

1) professional care for clinical wellness;

2) professional care for mental wellness;

3) ensuring a safe & secure environment,

4) constant surveillance and monitoring;

5) proficient emergency support,

6) creating a community & companionship for patients. Aligning to these principles of wellness can ensure safety, reliability, independence, and dignity in care for seniors suffering from Alzheimer’s.

Alzheimer’s interferes with daily functioning of an individual and may even lead to loss of identity and dignity. It is important that India acknowledges the growing senior cohort and prepares for their memory care needs. This would provide support to the caregivers and significantly reduce their burden. Prior to innovative interventions, India needs to invest in creating a robust geriatric care system with an increased focus on memory care.

While awareness about Alzheimer’s is on the rise, we still have a long way to go. Additionally, the conversation on caregiver’s burden and consequent support is even lower on the agenda. There is a need for India Inc. to support the government and focus on nurturing and building a robust senior care space in the country through committed action and timely implementation. 

(The author is Consultant Physician, and Head of Clinical Services at Antara Senior Care. Views expressed are personal and do not reflect the official position or policy of the FinancialExpress.com.)

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