This post is part of a series of guest posts on GPS by the graduate students in my Psychopathology course. As part of their work for the course, each student had to demonstrate mastery of the skill of “Educating the Public about Mental Health.” To that end, each student has to prepare two 1,000ish word posts on a particular class of mental disorders.
Quailty of Life for Caregivers of Individuals with Neurocognitive Disorders by Liz Vervack
Families face a variety of challenges in their daily life. With the decline in birth rates and the increase in life expectancy, families are facing even more complex issues than ever before. It is a wonder that families remain intact while facing these adversities. But what is more miraculous is the ability for these families to flourish and thrive despite the complications that may stand in their way. Families who are caregivers to individuals who suffer from cognitive deficits due to illness or another condition face additional challenges. Neurocognitive Disorders have a range of causes and symptoms, but they all share a common thread. These challenges all have a possibility to cause a decline in quality of life of all involved.
In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a primary feature of neurocognitive disorders is “a decline from a previous attained level of functioning”. These cognitive delays come from various conditions (such as Alzheimer’s, Traumatic Brain Injury, HIV infection, etc.) and can severely impair the independence and daily functioning of those who suffer from them. As the cognitive processes begin to decline, individuals can struggle with memory recall, functions such as completing complex tasks, word selection and declining motor abilities. This regression from their previous capabilities can often impair the individual’s ability to care for themselves independently. When this occurs, family and friends must step up to assist the person who can no longer care for themselves. This assumed responsibility places a burden on the new caregiver. The family then may experience physical, financial and an emotional “draining of resources” as they focus on caring for the individual. Resources, as it is used here, means the things (money, emotional support, vacation time, etc.) that a person or family may rely on when assuming the new role.
In Strengthening Family Resilience by Froma Walsh, she describes the hardships of caregiving for someone with dementia. She references the term “the long goodbye”, as caregivers have to accept the gradual loss of a loved one’s former self, family roles, and relationships” (Walsh, 2006). This illustrates how difficult the cognitive regression can be on the caregiver. Acknowledging the condition is difficult, but then watching as someone can no longer complete simple life tasks or remember who you are can be devastating. The emotional draining of this “long goodbye” can contribute to their negative responses on a quality of life survey. It can be exceptionally challenging to accept the loss without treating the ill individual as if they are already gone. It is vital for families who are tending for someone with a cognitive disorder, such as dementia, to make sure not to deplete their resources in attempt to keep afloat in the rocky waters of their new life.
In a study conducted about the stress, needs, and quality of life of family members caring for adults living with HIV/AIDS, they found that families caring for an HIV infected family members experiences high levels of stress, had a lot of needs unmet, and a poor quality of life. The stigma and discrimination the family receives on account of their ill family member heavily affects their quality of life. This, on top of the incredible amount of money required for treatment, affect the family’s abilities to maintain a good quality of life. Another example of a study done regarding the quality of life of caregivers was done by Ducharme and Geldmacher. They studied the factors contributing to the quality of life in families providing care to people with dementia. After studying 54 questionnaires filled out by caregivers regarding their family quality of life, they discovered 5 different categories that influence the quality of life. The five categories are as follows: family interactions, direct care/activities of daily living support, emotional/behavioral well-being, physical and cognitive well-being and disability-related support. The priorities of the physical and cognitive well-being were both discussed often. While the sample size was predominately female and of caucasian decent, the finding revealed something very interesting regarding family quality of life.
What was enlightening about the study by Ducharme and Geldmacher was that the participants were able to identify the areas in which they could improve their feelings about their quality of life. They said the better the health of the patient, the ability to have some independence from caregiving and more assistance with caregiving could greatly improve their quality of life. In order for the caregiver’s quality of life to improve, it appears to directly correlate with the improvement of the individual receiving the care. This characteristic of the caregiver matches with the role, as the caregiver is often asked to forgo their own needs to meet the need of the individual being cared for. In the chapter label “Resilience through Crisis and Challenges” by Walsh (2006), she highlight the need for walking a careful line between caring for the aging adult (or in this case, person with neurocognitive disorders) because you can begin to perpetuate a role reversal. In the proposed situation, the caregiver begins to tend to the needs of the patient, and in turn, the patient begins to become more dependent on the caregiver, and so on and so forth. This cycle will continue until death for some care giving situations, while other’s will end with the stopping of the actions. In order for this not to occur, Walsh states, “with prolonged strain over many yeas, it is important to validate the needs of a spouse or adult children to go on with their own lives while providing care”. This further supports the evidence found in Ducharme and Geldmacher’s study regarding quality of life for the caregiver.
There are a variety of other methods to help the caregiver’s maintain a positive and good quality of life. Beyond taking time for one self and using resources around them without depleting them, a suggestion has been to improve the quality of life of the individual suffering from a cognitive disorder and their caretaker, to adopt a pet or service dog. Dogs can be used for various assistance jobs that can take some of the dependency from the caregiver and provide the individual with some empowerment. Also, support groups and supportive friends and family members can help alleviate some of the pressure felt by caregivers. Having access to the most up-to-date information regarding ill-related topics and allows the caregiver to seek additional assistance. These options can greatly help the caregiver and provide them with coping abilities to become better caregivers. Watching someone thinking abilities decline cannot be easy but if the caregiver utilizes resources, takes some additional time for themselves, and reaches out for assistance when needed, their overall quality of life will improve.