She was a young woman in her mid-twenties. Her father had died two months ago. She experienced a combination of anger, sadness and intense agitation. The psychotherapist recommended that she postpone the initiation of treatment for an additional month. During her initial session, I discerned that her emotional state was not just due to the loss of her father, but rather the result of a combination of conflicting and contradictory feelings she had while caring for him during his final days. She experienced a mix of sadness, anger, frustration and relief. She had remained unaffected by any of the bodily ailments while tirelessly searching for the optimal remedy for her father.

The role of a caregiver family entails a multifaceted and intricate emotional upheaval in addition to practical and financial challenges. The treating physicians often overlook the psychological stress placed on caring families, failing to recognise that the progress of the patient is often heavily, and at times exclusively, dependent on their support and care.

Caregivers have two main challenges: burnout, which occurs while they are actively doing their duties; and bereavement, which occurs after their caregiving responsibilities have ended. Both are highly demanding and intricate. In general, caregiving can be a challenge due to three categories of health-related challenges.

1. Various forms of disability, specifically intellectual disabilities (ID) and related issues such as autism and ADHD. In addition, long-term mental health issues might also be encompassed. In these matters, the emphasis is on support and management rather than medication.

2. Degenerative diseases, such as dementia, and other diseases with poor prognosis and caregiving become increasingly demanding as time goes on.

3. Life-threatening and chronic illnesses such as cardiovascular disorders, HIV/ AIDS, and many forms of cancer. The patient’s quality of life continues to decline with severe mood swings.

While the nature and duration of caregiving may differ for these three groups of ailing individuals, the impact on caregivers is similar though different in intensity. Providing education and training to caregivers, however, addresses the degree of burnout and bereavement.

Upon the immediate detection of a child’s disability after birth, it is natural for the family to feel a sense of hopelessness and apprehension. Similarly, when a family member receives a diagnosis of a severe mental health disorder or when an individual becomes dependent on a certain substance, the situation unfolds in the same way. Individuals with disabilities, including those with ID, mental health conditions and addiction, may have significant behavioural challenges that can be highly demanding on caregivers. They exhibit high levels of aggression, engage in self-harming behaviours and display socially inappropriate conduct. Unassisted caregivers are required to multitask. They must attend to their fundamental care while confronting societal stigmas and embarrassments, with no glimpse of hope. The provision of care for individuals in Pakistan is not only extremely limited but also of substandard quality. Families are responsible for providing care due to the absence of services catering to this specific demographic, unlike the situation in developed nations. A few years ago, I organised a workshop in Islamabad with many families of young adults with ID and related disorders. Their distress and anguish were clearly evident, however, their lack of understanding and up-to-date knowledge regarding the problem of their child was disheartening. Undoubtedly, the responsibility of tending to such individuals is arduous, but there exist numerous therapeutic models that can improve the standard of care and alleviate the strain on the families providing care.

Considering dementia as an exemplar from the second category may provide a clearer understanding of the strain experienced by families responsible for caregiving. One does not require professional qualifications to be aware of the three stages of dementia that most diagnosed individuals typically experience. The caregivers encounter increasingly intricate challenges during the initial and middle phases. The patient exhibits significant cognitive disorientation, profound sadness, intense exasperation, heightened anger, restless behaviour, agitated demeanour and paranoid ideation throughout these stages. The patient’s frustration is directed more towards their immediate family members than anyone else. Occasionally, the individual’s character appears to undergo a complete and negative transformation. Insufficient knowledge of the origin of these intricate behaviours can be distressing for the caregivers. Regardless of their efforts, nothing is met with recognition. Rather, there is increased unhappiness and discontent. The caregivers are perplexed by the escalating challenges that become increasingly difficult to handle during the late afternoon and early evening, i.e., sun-downing. The sun-downing is linked to higher prevalence of symptoms in the two early stages. If such a challenge arises, it can be minimised by implementing certain environmental modifications.

Swiss psychiatrist Margaret Kubler-Ross delineated the problems of individuals in the aforementioned third category into five distinct phases. Initially, the individual attempts to deny the diagnosis, but as it becomes undeniable, anger ensues. From the divine to all others, everyone is blamed for the affliction. During the third stage, the patient initiates negotiation with God, doctors and caregivers to obtain additional assistance and flexibility. As circumstances deteriorate, sadness gradually infiltrates, ultimately leading the individual to surrender. The volatile and unpredictable behaviour exhibited during this process can be described as an understandable ordeal and distress, distinct from the act of managing it. Nevertheless, acquiring knowledge about them is always beneficial and mitigates the severity of burnout.

Another crisis ensues when caregivers experience the loss of the person they were caring for, leading to deep feelings of guilt. The caregivers begin reflecting on the shortcomings in their care. They begin experiencing remorseful flashbacks of instances when they lost their composure and said something inappropriate to the patient. Occasionally, this sense of guilt can be more detrimental than mere burnout.

Three strategies might be proposed to mitigate the stress and effectively handle the exhaustion and guilt experienced by caregivers.

1. Revised information and education regarding the issue and its anticipated trajectory.

2. Revised information, education and training regarding strategies for managing these patients.

3. Specialised services to provide varying degrees of assistance to patients and their caregivers.

The writer is a clinical psychologist. He lives and works in Ireland.

He can be contacted at akhtaralisyed@gmail.com