There is a lot of information on dementia, and even a lot about the concerns that families may have about the treatment of their loved ones in facilities, however there is very little if not any research regarding communication between dementia patients and their families before and after placement in a long-term care facility.
Clark, Bass, Looman, McCathy, & Eckert (2004), reported that while various quantitative and qualitative analyses have examined family involvement and the proliferation of care giving stress following placement, several gaps remain in the literature. Existing studies often examine the prevalence of involvement (ranging from visits to types of care), and do not determine the effects of involvement on the well-being of the family care provider. Moreover, research on care giving stress has largely analyzed whether stress increases, decreases, or remains the same after the institutionalization of a chronically impaired loved one; few studies examine whether continued involvement and care provision influence various measures of emotional stress, family conflict, or psychological well-being following NH placement.
Research on physicians' attitudes and practices (Coon et al., 2004) suggests several difficulties in providing quality dementia care. The article also discusses the relationship of the family care giver in the whole process. However, there is no information given on the communication before or after placement of a family member into a long-term care facility, some of the issues discussed in this article include physician uncertainty about their ability to recognize, diagnose, and treat dementias and skepticism about the value of diagnoses in these degenerative conditions; difficulties telling patients and family members the diagnosis and questions about whether patients or families really want to be informed; issues regarding time and reimbursement; and lack of knowledge about relevant community programs and services. Family concerns mirror many expressed by physicians that dementia often remains undiagnosed and that families are not informed of the diagnosis or are informed in an abrupt and dismissive manner (Coon et al., 2004).
In addition, families are often not provided helpful information about dementia, available medications, or community- based organizations that provide education, referral, intervention, or support, including the Alzheimer's Association. Problems also exist regarding accessibility and appropriateness of healthcare and social services. Many services are not available in certain areas or are not delivered appropriately to meet the needs of different cultural communities. Patient and family needs vary not only over the course of the disease, but also in response to life changes unrelated to dementia such that information and services useful at one point may not be helpful at another. Fragmentation and complexities of the service environment, combined with lack of public funding, can also substantially hinder access. Even when services are available, many families remain unaware of them. Although more and more communities have implemented programs and services for dementia patients and their families, much less has been accomplished in the primary care setting, especially in terms of the integration of healthcare and supportive services for this population (Coon et al., 2004).
Toseland et al.(1999)stated that demographic data in their research is presented about the primary caregivers who responded to the telephone survey and the care recipients suffering from dementia (Table 1). Our data show that care giving was very demanding for study respondents. The average caregiver in the study had been providing care for more than five years and offered an average of 46 hours of personal care and a variety of other types of assistance each week. More than 68% of the respondents lived with the care recipient, and more than 14% were caring for another disabled family member. More than 28% of respondents reported that their health was fair or poor, 51% reported that health limitations affected their ability to provide care, and 25% of respondents reported that care giving had a negative effect on their own health. Results from the CMAI indicated that almost 25% of care recipients had exhibited physically aggressive behaviors such as hitting, 50% had exhibited physically non-aggressive behaviors such as wandering, and 57% had exhibited verbally aggressive behaviors such as yelling. It is not surprising, therefore, that respondents also reported very high levels of objective (M = 10.4; SD = 4.8) and subjective burden (M = 39.1; SD = 11.6) on the SCB. Thus, the mean SCB score of M = 49.5 for this study sample indicates a very high burden level.
Data that was provided showed further that female care recipients were much more likely than male care recipients to be cared for by adult children (64.1% compared with 24.8%), whereas male care recipients were much more likely than female care recipients to be cared for by a spouse (62.6% compared with 19.1%). Because men do not live as long as women, they are likely to be cared for by their wives, but widows are more likely to be cared for by an adult child, who is usually a woman (78%). Data based on all reports to the registry during 1996 suggest that, with the exception of more married people and fewer Hispanic individuals, the random sample obtained for this study was representative of the entire registry population (Toseland et al., 1999).
This paper (Wenger, Scott, & Seddon, 2002) reported findings from the careers component of the Gwynedd Dementia Study. It is based on career interviews, using quantitative and qualitative data. It confirms earlier findings that carers for people with dementia are typically female and older than other carers, although it notes that caring husbands are amongst the oldest carers. The problems that are most common are those that cause psychological stress to carers. Carers were found to receive both help and appreciation from their families and to perceive neighbors to be helpful if needed. In Gwynedd, as elsewhere, levels of formal service inputs are low, but most of the carers appeared to receive the services they needed. Problems are primarily associated with crisis support and long-term care is accepted reluctantly. It is suggested that community care dementia specialists could play a supporting role for carers.
Barrett & Haley (1996), concluded that over the longitudinal course of a patient's dementia, severe symptoms such as aggressive behavior or psychosis can become unmanageable for the caregiver and often precipitate nursing home placement. Under these circumstances, many caregivers appreciate the physician's recommendation of nursing home placement. The physician has an important power in justifying such a decision by the care-giver, and physician support can minimize caregiver guilt with such actions. Physicians or a well-trained staff member can refer family members to the Area Agency on Aging for help in locating long-term care facilities in the community. However, nursing home placement often means trading one set of stressors for another. Because nursing home staff cannot provide the one-to-one care that was provided at home, families commonly experience the strain of seeing their relatives with food on their clothing, unattended incontinence, or such irritations as lost clothing. Physicians or their staff can refer families with concerns about nursing home care to the Area Agency on Aging, where they can be put in contact with the nursing home ombudsperson. Long-term care can be facilitated by the physician's sanction, support, and referral.
Caregivers of patients with AD are also often confronted with difficult ethical decisions concerning care for end-stage dementia patients. Decisions about tube feeding or other efforts to sustain patients with AD when the patient's quality of life is poor involve a close collaboration between the physician and the family. Sensitivity to caregivers' beliefs and reactions is vital (Barrett & Haley, 1996).
Too often the impact that dementia has on the care giver is overlooked. This study looked into the effects that having a family member with dementia on the well being of the care giver. Brodaty, Green, Koschera, & Koschera (2003), did studies to reveal the effects that having a family member with dementia had on the care giver. Most people with dementia have at least one supporter or caregiver (CG), usually a spouse or relative. CGs experience adverse psychological, physical, social, and financial consequences, such as higher rates of depression, poorer physical health than non-CG controls, social isolation, and direct (e.g., medications) and indirect (e.g., loss of earnings due to relinquishing of paid work) financial costs. CGs are crucial for maintaining people affected with dementia in the community. (Brodaty et al.), went further to conclude that when there is no CG, or when the CG is stressed, the likelihood of nursing home admission rises sharply. Clinicians and researchers have devised many methods of trying to help CGs such as education and training programs, support groups, and counseling. Successful interventions have been reported to reduce CG distress, depression, and psychological morbidity; to delay nursing home admission of patients; and to improve patients' psychological well-being. The aim of this study was to review the evidence for the outcome of CG interventions (excluding respite care, which is a patient-targeted intervention) and to provide recommendations for clinicians. The review has been restricted to studies involving informal CGs (persons providing unpaid care, at home or…
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