Understanding Resource Needs of Persons with Dementia and Their Caregivers

Abstract

In the year 2012, an estimated 15.4 million family members and friends provided 17.5 billion hours of unpaid care - valued at 216 billion dollars - to those with Alzheimer's and other dementias (Alzheimer's Association, 2013a). These statistics are profound when put in perspective of the untrained and unpaid services that these families and friends provide to their loved ones. Alzheimer's disease, which accounts for 60-80% of all dementias, is projected to affect 16 million people by 2050, and is the fifth leading cause of death for those above 65 years of age (Alzheimer's Association, 2012). The term dementia is an umbrella term that is used to describe a disease or condition that affects the brain's ability to function properly (Alzheimer's Association, 2012).Dementia is not a specific disease, but a descriptive term for a collection of symptoms that can be caused by a number of disorders that affect the brain. People with dementia have significantly impaired intellectual functioning that interferes with normal activities and relationships. They also lose their ability to solve problems and maintain emotional control, and they may experience personality changes and behavioral problems, such as agitation, delusions, and hallucinations. While memory loss is a common symptom of dementia, memory loss by itself does not mean that a person has dementia. Doctors diagnose dementia only if two or more brain functions, such as memory and language skills, are significantly impaired without loss of consciousness (National Institute of Health, 2012, p.1).According to the World Health Organization (2013), dementia is one of the most significant causes of disability among seniors globally. In addition to the functional limitations experienced by those diagnosed with this progressive disorder, their family caregivers also experience a profound negative impact on their physical, emotional and economic well-being (WHO, 2013).Due to cognitive changes it is often unsafe for persons with dementia to live alone and they are often cared for by a family member and/or a friend. Although drugs are available for the management of some dementia related symptoms, there is no drug that can arrest the progression of the disease. Members of the immediate family, such as spouses and/or adult children, often take on the responsibility of caring for a person with dementia (Alzheimer's Association, 2013a). Research suggests that caregivers often feel unprepared after a family member receives a diagnosis of dementia (Chenoweth & Spencer, 1986; Gibson & Anderson, 2011; Takai, et al., 2011). Additionally, family caregivers often struggle to understand the cognitive decline and associated behavioral changes of their loved one, often ascribe a negative meaning to their relative's behavior, and blame the person rather than the disease (Vernooij-Dassen, Draskovic, McCleery, & Downs, 2011).Having formal support services in place to educate family caregivers could improve their understanding of the expected functional decline of their care recipients, as well as provide coping mechanisms during caregiving. Clearly there is a need for family caregivers to be educated about available formal and informal resources. For example, Ducharme et al. (2011) found that more than half of caregivers they studied had a low level of knowledge of formal services that were available to support persons with dementia. Caregivers of persons with dementia had a higher level of unmet needs for formal services and faced more barriers in accessing services when compared to other caregivers of chronically ill patients (Harmell et al., 2011; Stirling et al., 2010). However, much of the research on dementia caregivers is centered on psychological well-being such as stress, depression, and anxiety (Brodaty & Donkin, 2009; Gaugler et al., 2008; Harmell et al., 2011, Takai et al., 2011). Although there is evidence to suggest that an increase in caregiver's mastery and self-efficacy leads to better coping, which in turn has a protective effect on their well-being (Harmell et al. …