Family caregivers are a heterogeneous group and caregivers and care recipients come in all sizes and shapes. The caregiving experience will differ according to the particulars of the situation. The type of relationship between the caregiver and the care recipient will affect how the caregiver experiences this responsibility. There are differences when the caregiver is the spouse of the care recipient, when the caregiver is the parent of the care recipient or when the caregiver is an adult child and the care recipient is an ageing parent.
A second factor that affects the care giving experience is the type of disability of the care recipient. The older parents of a son or daughter with mental illness experience care giving in a very different way than those who are young. The diagnosis of a disability of a care recipient is a major factor that will affect the care giving experience.
A third factor that affects the caregiving experience is the duration of the disability or the need for care. In some cases, care lasts just a few weeks for instance, if there is a physical injury. In other cases, it lasts years or decades.
Finally, the personal characteristics of a caregiver and the care recipient affect the nature of the caregiving experience. Two characteristics that are particularly important are age and gender. For example: we know, that women experience caregiving more negatively than men do. It takes a greater toll on a woman who is providing care to an ill or challenged family member than it seems to take on a man who provides care. The older the caregiver, the more difficult it seems to be.
A vast majority of persons with mentally challenged live either with their families or under the supervision of their families. Persons with mentally challenged are now living much longer than they did in the past. Many people with mentally challenged, a majority of them, have a lifespan that is as long as the general population. This change is due to the improved medical care made available to the persons with mentally challenged now as compared with the past and also the better services that are received by this group. So this is a population that is living longer and longer.
In the past, the human service professionals concerned with persons with mentally challenged focused almost exclusively on younger children and on their needs. Now with the change in the demography of the population, there is also a need to think about the needs of families who have an older member with mentally challenged. There needs are different. It may be that the younger care recipient has a great need for educational services, while older families may have a greater need for health services.
The mothers of the mentally challenged children face a very unusual and poorly understood dual challenge. On the one hand, they have a continuing responsibility for the care or supervision or support for their son/daughter with mentally challenged. On the other hand, as they are aging, they need to adjust to the manifestations and consequences of their own personal aging process. In most of the families in India, the mother is not only primarily responsible for the son or daughter with mentally challenged, she also is a caregiver to another family member, usually a spouse or an older parent who needs her care.
On the one hand, a great deal is known about young families who provide care and support to their handicapped son/daughter and the factors that predict positive outcomes in young families. For example, we know that having a strong social support network is critical in buffering the effects of stress in those young families with a son/daughter with mentally challenged. On the other hand, there is a great deal known from the field of gerontology about caring for an elderly relative who has become dependent. For instance, we know that a caregiver's feelings of burden may affect his or her ability to continue in this role. But what we don't have, is an understanding of how these two bodies of knowledge come together. Can we generalize from our knowledge about young families with a child with a disability and our knowledge about older families who are caring for an elderly person to a situation where an older parent is caring for an adult son or daughter with developmental disabilities? That is not something we know yet.
Actually, stepping back from our particular example of older families with a son or daughter with mentally challenged, it has often been observed that we don't know very much about the middle years of parenting. We know a lot about parenting a young child. This is not just for parents of children with disabilities, but also for parents in general. We know a lot about what happens to the parent-child relationship in old age, when the parent has become frail and needs the support of the child. The long stretch of what we call mid-life parenting is an area that hasn't really been explored and examined adequately.
There are several reasons why studying ageing parents of a son or daughter with mentally challenged provides a good vehicle for examining parent-child relationships across the full life course. As mentioned before, persons with mentally challenged are now living much longer than they did in the past. Most of them expect a life course as long as the rest of the population. In the past, it was not uncommon for a person with mentally challenged to die in childhood or in young adulthood. Because of this longer length of life, the period of family dependency, the period of time where the parents have to provide care and support and supervision for their son or daughter with mentally challenged, is now much longer than it was in the past. Service providers or researchers have a great deal of interest in learning how parents cope with this very extended period of family care giving.
Another reason to study older families is to understand the effects of off-cycle or off-time events or family roles. Most of the older women do not have an ongoing, active-parenting responsibilities for an adult child who lives at home. Rather, most adult children have moved out of the home and their parents have established adult-to-adult relationships with them. In contrast, the women in our study have continued active parenting responsibilities for a son or daughter who is still living at home. This is what we call an off-cycle or off-time responsibility. There is fairly good evidence that a family responsibility or a role or an event that occurs at an unusual time or at an atypical time in the life course is more stressful then when that same event occurs at the expected time of life.
There's yet another reason to study older care giving families is to study what happens when the care recipient outlives the caregiver. This is also a very unusual situation. In most family caregiving situations, it is the caregiver who survives after the care recipient has died. But when the care recipient is a child and the caregiver is the parent, it is likely that the family member with mentally challenged will live longer than the parent. This introduces a new element into the caregiving experience. That is, planning for the future care when the parents are no longer there to provide the primary support to the son or daughter.
Finally, it is important to understand families at a time of life that is full of change in family composition and family roles. These changes are occurring because of the increased risk of disability and illness that accompanies old age.
