Dementia can be defined as a progressive decline in cognitive function caused by damage to brain cells. Although dementia is a geriatric problem, its occurrence has to be recognized in any stage of adulthood with diminished memory, attention, language and problem solving skills. Dementia, in its advanced stages often causes disorientation in time and place. Dementia can be broadly classified as Cortical and Subcortical dementia. Cortical dementia includes Alzheimer’s disease, Vascular dementia including Binswanger's disease , Dementia with Lewy bodies , Alcohol-Induced Persisting Dementia , Korsakoff's syndrome ,Wernicke's encephalopathy , Frontotemporal lobar degenerations , including Pick's disease , Frontotemporal dementia ,Semantic dementia , Progressive non-fluent aphasia, Creutzfeldt-Jakob disease, Dementia pugilistica and Moyamoya disease. Subcortical dementia includes Dementia due to Huntington's disease , Hypothyroidism, Parkinson's disease , Vitamin B1 deficiency , Vitamin B12 deficiency , Folate deficiency , Syphilis, Subdural hematoma , Hypercalcaemia, Hypoglycemia , AIDS dementia complex , Pseudodementia often associated with clinical depression and bipolar disorder and substance-induced persisting dementia related to psychoactive use. Although nurses are familiar with the treatment and routine patient care, care for such patients and their families demands an extra dimension (Wrigley et.al, 2003). It is interesting to note that people with dementia can still maintain a normal life with family support and a nurse who can help the patient family develop an understanding of these patient’s problems can effectively help reducing the care giving family stress (Vitaliano et.al, 2003).
Dementia, Family and Family Stress
A person with dementia displays a variety of negative behaviors such as incontinence, loss of communication skills, aggression, wandering, shouting and yelling (Wrigley et.al, 2003). The problem is more severe in older patients. They often fall and sustain injuries. Their families often do not want them at home and believe that these patients need the supervised care provided in a nursing home. But, to a patient with dementia in the early stage, a caring relative may be all that is needed to reassure the patient from time to time. It is important to note that these patients live in the moment and will cope best with familiar people, routines and surroundings (Wrigley et.al, 2003). A recent research conducted with 23 studies involving 3,072 participants – ages 55 to 75 years – over a 38 year period to compare the physical health of caregivers of dementia patients has revealed that caregivers had a 23 percent higher level of stress hormones and a 15 percent lower level of antibody responses than noncaregivers (Vitaliano et.al,2003).The studies have shown that elevated stress hormones can lead to physiological problems such as elevated blood pressure and glucose levels, which can increase their risk for hypertension and diabetes. The studies have also revealed that female caregivers reported more health problems. A study of 50 family caregivers of elderly patients with dementia on the 28-item General Health Questionnaire (GHQ) has indicated severe stress among the care givers. The presence of delusion, hallucination, depression, insomnia, incontinence and agitation were significant in the study population (Heok et.al, 1998).
Another study on a sample of 129 caregivers with reference to burden, tolerance, mutuality and feelings of closeness between caregiver and patient has shown that caregivers are mainly spouses (67%) and female (73%).These Caregivers have been found to experience predominantly negative effects of care giving on their physical and mental health, rest and sleep, leisure time and social life taking us to the conclusion that care giving of dementia patients has a bio-psychosocial impact and closeness between caregiver and patient being the key factor in deciding the long-term outcome (Kesselring et.al,2001). A recent study to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework has shown family functioning as an intervening variable in the relationship between objective burden and distress. The results of this study have also shown that family functioning significantly contributed to distress suggesting that interventions targeting structural family problems may reduce caregiver distress (Mitrani et.al, 2006).A recent study to examine the presence and correlates of Interpersonal Family Stress (IFS) among 56 outpatients (mean age 74) meeting DSM-III-R (APA, 1987) criteria for primary degenerative dementia of the Alzheimer's type (Alzheimer's disease, AD), and their caregivers has shown that the caregivers do have IFS in areas including disrupted relationships leading to anger and frustration; interference with normal activities; feelings of uneasiness and the use of caution in communication (Kramer et.al,1993). There is no doubt that everyone in a family is affected by the presence of a family member with dementia (Jenson et.al, 1999).
Any family caring a dementia patient experience physical, emotional, financial, and social burdens associated with the care giving role. Thus, any intervention should assess and examine the physical and psychological effects of dementia care , describe the factors that help determine the nature and magnitude of these effects, discuss several approaches to caregiver intervention designed to reduce the negative impact of this challenging role taking into account the sociodemographic characteristics like gender, relationship to the patient, culture, race or ethnicity, caregiver resources like coping, social support, availability of a companion animal, and personal characteristics (Connell et.al,2001).
To achieve an effective nursing intervention nurses who provide care to such families should be aware of the problems that relate to dementia, the signs and symptoms of these responses, and the causative factors. Interventions have to be designed only after careful assessment of the resources of the family and the interventions should help the family identify and develop additional resources (Jenson et.al, 1999). The use of metacomponents of problem solving such as recognizing the existence of a problem and defining the nature of the problem helps accurate diagnosis (Jensen et.al, 1999).It is also important to recognize that social norms, attitudes and beliefs in a family play a vital role in care giving and hence, interventions should be designed taking into account these aspects (Jimenez et.al, 2006). Some interventions based on the Modeling and Role-Modeling theory and paradigm for nursing (Erickson et.al, 1983) help the nurses to understand the needs of these families. The basic needs include rest, safety, freedom from fear, love and esteem. Studies have shown that talking to each family member and encouraging them to talk about their feelings and concerns validate their feelings and such an interaction about feelings and fears have been shown to reduce some of the burden (Jensen, 1997). This nurse –family interaction normalizes these feelings and helps the family members understand that anger, frustration, and guilt as normal responses to the stressors of care giving, closely related to the multiple losses they are experiencing (Erickson, 1995). A teaching plan for the family that includes the disease process, the relationship between loss and grief, and the relationship between stress and illness facilitates family members to understand the reasons for the patient’s behaviors and their own responses, which, in turn, enables them to be more tolerant with the patient and with each other.
Dementia demands serious levels of dependency and family stress is a major factor in the decision to institutionalize such patients (Morycz, 1980). Nursing interventions can alleviate many problems of the family creating a definite system of support to these patients. A nurse’s promotion of the strengths of the family encouraging them to identify ways to work together plays a vital role (Erickson et al., 1983) in this process.
Copyright 2008- American Society of Registered Nurses (ASRN.ORG)-All Rights Reserved