Differences between family caregivers and people with dementia in recognizing the difficulties encountered in the lives of people with dementia.

Abstract

Objectives Dementia brings new difficulties in the lives of people with this disorder. It is important that family caregivers accurately recognize these difficulties to help their family members live fulfilling lives. Based on information gathered from people with dementia, family caregivers, and nurses providing medical care to this population, this study compared the differences in perspectives related to the difficulties associated with dementia between the family member with dementia and the family caregiver.Methods The primary participants in this investigation were 106 people with dementia and their family caregivers. Participants with dementia were 65 years and older who were receiving home care in Tokyo. Participants were interviewed about their difficulties while family caregivers completed a questionnaire with basic information regarding people with dementia. Additionally, the nurse providing medical care to the person with dementia completed a questionnaire about the medical care. In this study, difficulties in the lives of people with dementia was defined as impediments in life due to dementia. Difficulties were classified according to 12 symptoms based on responses that appeared frequently in the interviews. The 12 symptoms were pain, hallucinations/delusions, aggressive behavior, memory loss, disorientation, communication impairment, anxiety/confusion, toileting problems, gait disturbance, dietary deficiency, sleep disorder, and social withdrawal. Additional information was gathered and analyzed that included diagnosis and severity of dementia, need for long-term care, core symptoms of dementia, behavioral and psychological symptoms of dementia (BPSD), and delirium.Results The family caregiver's perspective about the difficulties encountered in the life of their family member with dementia was often different from the perspective of the associated family member. No family caregivers recognized that pain was a difficulty, and there were only a few cases in which pain was treated. Alternatively, many family caregivers recognized that hallucinations/delusions and aggressive behavior were difficulties experienced by people with dementia. There was also a significant correlation between the experience of pain and the presence of a sleep disorder.Conclusion The present results clarified the differences between family caregivers and people with dementia by recognizing the difficulties in life experienced by people with dementia. Such difficulties are not solved by the care performed by family caregivers alone. Further investigation is needed to identify those factors that enable people with dementia to live fulfilling lives.