By Aparna S
May 14, 2024: A caregiver is a person who takes care of and provides for another individual who cannot take care of himself or herself.
Taking care of a mentally ill individual is a difficult task, more so if it is a chronic mental illness, like dementia.
Because a mentally ill individual will need assistance and supervision in the simplest of their activities, which, when done daily is a physical and psychological burden on the caregiver.
This physical, emotional and financial toll on the caregiver is termed a “caregiver burden.” This often goes unnoticed and unaddressed, since the attention is focused on the patient and theirillness other than the caregiver.
Having a chronically ill, dependent person to take care of is a full-time responsibility and the caregiver burden increases with the progress of the illness.
Depression, anxiety
This works both ways as the burden on the caregiver will reflect upon the quality of care and result in negative disease outcomes.
Depression and anxiety symptoms are the most commonly observed ones in caregivers of the mentally ill. The domains of family functioning, social interaction, finances and physical health are the most affected.
Caregivers often have to sacrifice their preferences and undertake a lot of stress which usually goes unnoticed. This hurts the caregiver’s mental health and quality of life. Worldwide, about 80% of caregivers experience “caregiver burden,” which is reflected in their duties towards the patient.
Caregiver burden
Factors like the patient’s character, caregiver’s personality and attitude towards the patient, relationship between the caregiver and the patient, time spent together, and the severity of the illness impact the intensity of the caregiver burden.
In the era of more home-based care than institutional psychiatry, the caregiver’s well-being is an important priority.
Many of these caregivers have had no formal training or experience in taking care of such patients which also results in high levels of stress. Due to the considerable amount of disability associated with mental illness, these patients are increasingly dependent on their caregivers.
Burnout
In chronic mental illnesses like dementia, the caregivers are often isolated from society and deprived of adequate social interaction due to their caregiving responsibilities. It has been observed that female caregivers suffer more in this context than males.
In India, more than 90% of mentally ill persons live with their families. The family caregiver has to multitask — taking care of daily activities, supervising medications, hospital visits and financial needs — and all these in addition to other family individual responsibilities.
This one-man show often cannot survive long and a psychological “burnout” happens.
Stress factors
The family caregiver has often been neglected, even by healthcare professionals. The importancen of healthy coping strategies should be emphasised on every visit.
Like the patient, the caregiver should be questioned about stress factors and offered timely help. They should be given adequate time off and encouraged to have healthy social interactions.
Caregiving responsibilities can be divided if there are multiple relatives available. Through such measures, the mental and physical well-being of the carer must be ensured, as it is a key factor in maintaining quality care for a mentally ill person.
(Dr Aparna S is a consultant psychiatrist and an Assistant Professor at the Believers Church Medical College Hospital, Tiruvalla, Kerala. Views expressed are her own and not of an organisation or company.)
