Alzheimer dementia is the sixth leading cause of death in the United States and the fifth leading cause of death among people aged 65 years and over in the state of Arizona (Alzheimer’s Association, 2018). An estimated 5.7 million persons in the United States have Alzheimer’s dementia. The cost of care for people with Alzheimer’s dementia and other dementias was estimated to be $232 billion dollars. The southern and western parts of the United States are expected to experience 50% and greater increase in number of people with Alzheimer’s dementia. In Arizona the change in Alzheimer’s incidence in 2025 is projected to be an increase of 42.9% (Alzheimer’s Association, 2018).
The increasing number of individuals with Alzheimer’s dementia will have a marked impact on health care systems both locally and globally, as well as on families and caregivers. Caregiving provided by family members of people with Alzheimer’s dementia is somewhat similar to help provided by caregivers of other diseases. However, dementia caregivers tend to provide more extensive assistance with instrumental activities of daily living and provide care for a longer time period on average than caregivers of older adults with other conditions. The progression of the disease may occur in different ways, but the most common symptom in the early stage of the disease is diminished short-term memory (Alzheimer’s Association, 2018). For example, difficulty remembering names, and the details of recent events are often early clinical symptoms of Alzheimer’s dementia. Early disinterest in activities and depression may also occur. These symptoms impact the quality of life of both the caregiver and care recipient.
The changes in caregiving over time of the disease progression can result in caregivers experiencing increased emotional stress, depression, impaired immune system response, health impairments, loss of wages due to disruptions in employment, and depleted income and finances (Kiecolt-Glasser, Preacher, MacCallum, Atkinson, Malarkey, & Glaser, 2013).
The demands for caregiving increase as the disease progresses, many caregivers are not prepared for dealing with symptoms that evolve such as agitation, resistance to care, emotional liability, delusions, hallucinations, repetitive vocalizations, wandering, anger, and paranoia. Dementia caregiving is associated with potentially decreasing a caregiver’s quality of life. Family Caregiver Alliance recently stated that 63% of caregivers will predecease their care recipient (Family Caregiving Alliance, 2016).
A caregiver who practices self-compassion can experience what is considered a protective factor, fostering emotional resilience (Neff, 2015). Self-compassion can be viewed as a useful emotional regulation strategy, in which painful or distressing feelings that caregivers may experience are not avoided but are instead held in awareness with kindness, understanding, and a sense of shared humanity (Neff, 2015).. Having compassion for one-self implies that caregivers will try to prevent the experience of suffering in the first place, giving rise to proactive behaviors aimed at promoting or maintaining well-being and improving quality of life. Caregivers who reported higher level of preparedness for caregiving experience lower levels of caregiver stress and higher levels of health and well-being (Allen, & Leary, 2013). The goal is to better understand the associations of dementia caregiver knowledge, quality of life, and self-compassion via an innovative psychoeducation intervention program for rural caregivers of persons with early-stage dementia and mild cognitive impairment.
Interventions aimed at addressing the needs of caregivers of persons with dementia could have important positive impact on the caregiver and care recipient’s quality of life. Providing education and support for caregivers has been shown to improve or maintain the quality of life of caregivers of persons with dementia and help caregivers cope with stressors (Bell, et al., 2006). Studies have shown that increased knowledge about dementia and the use of positive coping skills significantly diminished the daily struggles with the illness (Bell, et al., 2006; Goldberg-Arnold, Fristad, & Gavazzi, 1999). Caregivers of persons with dementia who participated in a multicomponent caregiver intervention that included psychoeducation intervention along with respite and counseling, demonstrated lower rates of depression and improved quality of life (Bell, et al., 2006). There are a growing number of psychoeducation interventions programs (PIPs) that provide skill-building education to those who are diagnosed with a mental illness such as dementia and have been used with caregivers of persons with dementia (Goldberg, 1999). Recent studies have shown positive results with psychoeducational interventions on caregiver’s increased dementia knowledge, use of positive coping skills, and reduction of caregiver stress that significantly improve caregiver well-being (Bell, et al., 2006; Schulz, et al., 2002; Sorenson, Pinquart, & Duberstein, 2002). However most programs are provided in urban medical center and not available or easily accessed for rural caregivers. Four themes were identified from a literature review conducted regarding rural caregiver’s of persons with dementia: 1) access to health care, 2) unique rural needs, 3) application of knowledge, and 4) rural cultural competence (XX, Price, & Neder, 2016). There is a possible comparison of these four rural caregiver’s and caregiver’s challenges to low and middle resource countries in how they may experience, obtain knowledge and support needs in order to address health care issues that many providers, caregiver’s and care recipients are currently experiencing. Therefore, the overall objective of this research is to implement the psychoeducation intervention program (PIP) to measure changes in rural caregiver knowledge of dementia, quality of life, and self-compassion.
The purpose of this descriptive quantitative one-group pre-test-post-test intervention study is to determine if there is a relationship between self-compassion, increase in caregiver knowledge of dementia, and improvement of quality of life. The implementation of the five-week PIP is for rural caregivers of Northern Arizona of Navajo county who identify as a caregiver of a person with early-stage dementia and mild cognitive impairment.
Hypothesis 1: What is the significance of the PIP on rural caregiver’s dementia care knowledge and quality of life?
Hypothesis 2: Will the PIP improve rural caregiver’s quality of life after learning and practicing self-compassion strategies?
This study will predict that rural caregiver’s quality of life will improve by learning and using self-compassion strategies. Utilizations of the Carpenter’s Alzheimer’s Disease Knowledge Scale (ADKS), Neff’s Self-compassion Scale-Short Form (SCS-SF), Logsdon’s Quality of Life- Alzheimer’s Disease Scale (QOL-AD), and the World Health Organization Quality of Life Scale (WHOQOL_BREF) for the five-week self-compassion PIP will demonstrate the benefits for caregivers in the rural and underserved region of Northern Arizona. The PIP will provide knowledge of dementia, support and education of caring for self and self-compassion strategies to enhance resilience and improve rural caregiver’s quality of life.
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