PSA6669 - SECTION 8: GATHERING INFORMATION FROM THE UNPAID/INFORMAL CAREGIVER
Practitioners should be aware that the individual on whom they are conducting the psychosocial assessment is not the only person who needs to be included in the assessment. Typically, psychosocial assessments are initiated because of some problem or concern in the functioning of an individual.
These individuals are often elderly, or children or adults with disabilities or chronic medical conditions. These same individuals are likely also to have an unpaid caregiver.
There are two reasons why a comprehensive psychosocial assessment should also include the unpaid/informal caregiver. The first is an economic reason. The informal/unpaid caregiver contributes directly and indirectly to minimizing the cost of care to functionally impaired person.
The second reason is that studies have shown that informal caregivers who are under high stress tend to be less attentive to the needs of the functionally impaired person and engage in harmful acts toward the impaired person especially if there was a poor relationship prior to the start of care giving and also if the caregiver is depressed. [Williamson, G.M. & Shaffer, D.R. (June, 2001). Relationship quality and potentially harmful behaviors by spousal caregivers: how we were then, how we are now. Psychology and Aging. 16 (2), 217-226.]
Assessing caregiver stress can result in some positive outcomes for both the impaired person and the individual acting in the role of informal/unpaid care giver. For starters, identification of caregiver stress may lead to an opportunity to suggest ways to reduce social isolation through the use of adult day care, respite care, support groups for the caregiver, mobilizing other family members or other members of the person’s support group, providing information to the care giver to help with understanding of behaviors that cause the stress and facilitating establishment of personal boundaries and reasonable expectations. [Alzheimers Association. Caregiver Stress (Coping). Online at: http://www.alz.org/Caregivers/Coping/caregiverstress.htm Retrieved July 6, 2003]
Caregivers may also provide care to children or grandchildren. The caregivers could also be children under the age of 18 who provide care to their parents or grandparents. In 2006, AARP estimated that caregivers provide an average of 21 hours of care per week or 1,080 hours per year.
Unpaid caregivers provide a mixture of types of care, from highly skilled care planning and negotiation with health care providers and insurers, to management of complex medical equipment and treatments, medications, and help with daily activities of living, such as bathing, dressing, grocery shopping, transportation, psychological support and comfort - with an estimated economic value of $350 million per year. [AARP Public Policy Institute, Issue Brief 82 (2006) from http://assets.aarp.org/rgcenter/il/ib82_caregiving.pdf ]
There are costs associated with being an unpaid caregiver. These include direct cash support for groceries, medicines, medical supplies or direct financial contributions. Other costs of care giving include lost wages and retirement income, lost productivity, negative health effects including a higher mortality rate than non-caregivers.
There are physical burdens to the caregiver related to transfers, personal hygiene, skin integrity, mobility equipment. There are emotional burdens related to feelings of guilt, being depressed or overwhelmed by being the dependent person’s only source of advice, moral support and social contact.
Socially, caregivers become isolated and withdraw from activities that previously provided a source of self satisfaction. There may also be a measure of anxiety about how their dependent person would be accepted in public social situations.
Informal or unpaid care giving delays or prevents the use of institutional long term care. Informal caregivers provide a quality of life that is not available except from persons who have strong feelings of love and duty based on intimate personal relationships. For these reasons it is important to preserve and protect the informal caregiver.
One method of preserving the effectiveness of the informal caregiver is to include this person as part of the comprehensive psychosocial assessment. Practitioners should be aware of the signs and symptoms of caregiver stress. These include denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration and health problems such as weight loss or gain, headaches, stomach aches, other physical problems, and avoidance of medical professionals.
This information can be obtained through an interview or by using one of the quantitative assessment tools such as the Zarit Caregiver Burden Scale. [Zarit SH, et al. (1980). Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist, 20(6), 649–655].
The Caregiver Strain Index is another standardized tool used for measuring informal caregiver burden. It measures stress to the care giver in the following domains: employment, financial, physical, social and time. This tool can effectively identify families who would benefit from a more comprehensive assessment of care giver stress. [Robinson BC. Validation of A Caregiver Strain Index. J Gerontol 1983;38:344-348].
With successful identification and intervention for caregiver stress, premature institutionalization could be prevented. By preserving the emotional, physical and financial health of the unpaid/informal care giver, it may also be possible to limit the neglect of the needs of the impaired person and avoid any abuse of the impaired person.
One of the benefits of aging in place is to maintain a satisfactory quality of life for the person who is the recipient of the care giving. This can only be accomplished so long as the health and well being of the care giver is maintained.
With or without a standardized screening tool, the practitioner should be aware of the signs of care giver stress. These include denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration, health problems such as weight gain or loss, headaches, stomach aches, other physical problems and the avoidance of health care professionals.
At a minimum the practitioner should be able to suggest further assessment or direct the care giver to resources for support.