Caring for an elderly person with dementia is a major life challenge and it entails a great deal of emotional, physical, social and financial burden. Dementia is a progressive disease and those who suffer from it gradually lose the ability to live independently without the assistance of others. Majority of them are cared for by family caretakers and this class of individuals are placed in a situation of escalating personal demands. Most often caregivers perceive it as one of the most difficult situations being encountered. The stress of carers is an important issue for public health care, because of their central role in the care of persons with dementia and the negative health consequences they may experience. Its importance gains prominence, due to the expected increase in numbers of elderly persons with dementia and their family carers.

Dementia is not merely an age-related memory impairment, but it is the impairment of higher cortical functions which includes memory. The patient gradually loses the capacity to solve problems of day-to-day living, fails in the correct and appropriate use of social skills and also in control of emotional reactions. Patient’s ability involving the interaction of perception and voluntary movement is also affected. Caring for an individual with Alzheimer’s disease or related dementia can be challenging and at times overwhelming. Such stress and frustration with its impact on carer’s physical and mental health can set a scene for potential abuse. Many have even referred them as ‘hidden victims’ of Alzheimer’s disease.

In the moderate stage of dementia, the patient often requires some level of support from other individuals to enable them to maintain their function. It is often in this stage that carers begin to realize the full extent of the various demands upon them. While the deteriorating memory function is a problem, it is usually not the main feature that impacts upon the carer. It is more often the personality and the behavioural changes that cause the most concern, having the greatest effect on those carers who live with the dementing person. While talking about the support system of persons with dementia, families remain the first, most reliable and the most acceptable source of assistance. Most families would probably prefer to look after their disabled relatives for as long as possible at home.

However, because dementia is such a slowly progressive condition, by comparison with illness such as cancer, the time frame over which care needs to be provided is quite long. Without a strong community care system, most families and other carers are hamstrung in their efforts to look after the person with dementia at home. Placement into a residential or nursing care facility is again and often a very stressful process for both the dementing person and the caregiver.

Majority of Alzheimer’s disease caregivers age 65 and these caregivers are twice as likely to report physical strain and high levels of emotional stress as a direct result of caregiving responsibilities. Consequences of caring may also include the loss of companionship, support of a life partner and the detrimental effects of caring on the carer’s health. Many of them even report lower life satisfaction as caregivers. Family caregivers, who have a significantly depressed mood, may be adversely affected in their ability to perform desirable health maintenance behaviour or self-care behaviours. The vehicles of psychological stress have been conceptualized as adjustment to change, daily hassles and role strains. Many caregivers of dementing persons are at risk of experiencing even clinical depression.

Higher frequency of behavioural problems presented by the patient is associated with an elevated level of caregiver’s depression and burden. Carers face unfamiliar and unpredictable situations, which increase stress and anxiety, more particularly when the behavioural problems of the demented patients cannot be successfully managed on a consistent basis. Caregiver’s distress is particularly associated with aggressive behavioural disturbance. Not all changes of behaviour are a problem. Often an explanation that the behavioural change is part of the dementia allows the carer to tolerate it. At other times the behaviour itself is not abnormal, it is just occurring in the wrong place or at the wrong time. Physical and functional impairments in dementia patients may increase the difficulty of providing physical care and may be more distressing, for older family caregivers, particularly spouse caregivers.

Gender is a very common risk factor related to carer’s depression in dementing persons. These gender differences in levels of depressive symptoms and depression may be due to variations in stress exposure, coping responses used, the role of social support and obviously the biological factors. Female carers seem to suffer higher levels of depression, certainly because women in societies are more likely to be ‘hands on’, that is they tend to do everything themselves rather than delegate to others. Male carers tend to have more of a ‘managerial’ style that allows them to distance themselves from the stressful situation to some degree by delegating tasks. Age-associated impairments in physical competence make the provision of care more difficult for older caregivers, more particularly in cases where the spouses are living alone.

Another very significant predictor of caregiver’s depression is health. Caregivers with lower levels of physical health are more vulnerable to the psychological consequences of care giving. They are at a greater risk of developing mild hypertension and have an increased tendency to develop a serious illness as well as increased risk for all-cause mortality. Men and women who suffer depression have greater cardiovascular risks. Many carers do not pay sufficient attention to their needs for a healthy diet, sufficient sleep and regular exercise. These practices are indeed important for successful stress management.

Certainly the caregiver’s own physician is the first line of defence. But in today’s pressured health care environment, will a physician be able to take the time to inquire into the caregiver’s home life when the presenting complaint is a ‘bad back’, insomnia or other physical ailment? At the very least, physicians should be aware of the potentially detrimental effects of care giving and ask about it. Physicians who care for a patient with dementia, but are not caregiver’s physician, have responsibilities as well. The quality of care depends on a caregiver who is able to function and has adequate support from formal services and community resources. Caregivers frequently say that they want better information from their physician about the disease, what to expect and how to handle its manifestations.

Abuse, whether physical, psychological, sexual and financial, prevails in most of the families with dementing patients, which brings about both way crisis in the life of caretaker as well the patient. Caregiver’s depression, while providing care to the patient may lead to both verbal and physical abuse. Again, mental health factors such as caregiver’s depression while caring for a person with dementia increases the risk of abuse within a caregiving relationship. In some cases, it may also cause the patient to be uncharacteristically aggressive. In other cases, verbal abuse or physical violence may have been typical of family interactions before the illness and may be exacerbated by the illness. Caregivers who report directing abuse toward the patients are often more stressed or burdened by caregiving responsibilities and depression than individuals not engaging in abuse. Abuse prior to the onset of dementia appears to be associated with a greater likelihood of abusiveness between caregivers and care recipients once dementia occurs.

Carer’s depression on the higher level is thus a serious public health problem leading to substantial costs, in varying regards to society. Quality care needs to be delivered to both units, the sufferer and the carer, if a meaningful package of care is to be allocated. Vigilance is required from those professionals involved in dementia care to reduce carer burden and to detect early signs of compromise in carer’s mental health.

Dementia is unquestionably a family affair, as families today provide more care to a greater number of older people than at any other time in our history. The length of the illness, behavioural symptoms and other overwhelming expenses can result in family crisis. Families are often ill equipped to understand symptoms and progression of the disease, basic care and behavioural management techniques, crisis intervention strategies, long term care planning and strategies for self preservation. Thus support of care giving families through education, research, counselling and friendly services is thus a primary mission of those concerned with the care of persons with dementia and their families.

(The writer is a clinical psychologist and psychological counsellor)

Pahi Baishya