Caregiver Burden in Different Stages of Alzheimer’s Disease

Abstract

With an increasing number of patients being diagnosed with Alzheimer's disease (AD) daily, it has become one of the major problems in public health. The increase in the number of dementia patients in low- and middle-income countries is expected to be much more than that in developed countries. As a result, the economic burden of dementia, both worldwide and in Turkey, is growing. Moreover, AD leads to emotional burdens and psychological distress in family member(s) and caregiver(s) alongside the patient. Each stage of AD imposes different responsibilities on caregivers, increasing their burden. The suffering and emotional burdens of caregivers from these responsibilities lead to a decreased quality of life and disturbed body physiology. Incapacity, despair, weariness, and loneliness are the hidden emotions of this iceberg. This review aims to gather the results of studies on caregiver burden in different stages of AD, attract attention to those results that may have been ignored in Turkey, and shed light on the solutions required to overcome the problems in caregiving of AD patients.

Facing Costs With Dementia: Daily Lives Perspectives From Informal Caregivers

“…According to the narratives collected in our study, not only physical health, but also the psychological well-being of caregivers was compromised throughout the caregivers' career. This has been documented in several other studies: dementia seems to modify the quality of life of caregivers, with serious impair on psychological health due to the daily emotional stress and burden experienced during care [38][39][40][41]. In the process of care, most of the day of caregivers is dedicated to the person with dementia; the caregivers' personal and social life is put off, leading to social isolation, and feeling of loneliness are typically reported [41,42].…”

Factors associated with long-term impact on informal caregivers during Alzheimer’s disease dementia progression: 36-month results from GERAS

“…their relationship to the patient and whether living with the patient or not), as being associated with the subjective caregiver burden (Beinart et al, 2012;Bergvall et al, 2011;Brodaty et al, 2014;Conde-Sala et al, 2014;Park et al, 2015). More objective but equally important burden indicators, such as caregiver time and costs, and how they change with the progression of ADD severity, have received less attention (Bergvall et al, 2011;Fisher et al, 2011;Koca et al, 2017;Wolfs et al, 2012). Identifying drivers of the caregiver burden at different stages of AD could highlight areas in which interventions may benefit both caregivers and patients.…”

Staging dementia based on caregiver reported patient symptoms: Implications from a latent class analysis

“…Secondly, through this new strategy, caregivers can easily figure out the stage of the PWD they are taking caring of, which provides the foundation for the group tailoring of support towards the caregiver. Given that there were successful attempts of organizing caregiving considerations based on stages of Alzheimer's disease [44,45], and qualitative evidence on caregiving experiences revealed similar key themes and caregiving needs despite caring for PWD with different diagnosis [7,9,46,47], we believe that caregiving consideration of other types of dementia could also be organized similarly. For example, caregivers taking care of PWD in the early stage mostly need to deal with issues such as role transition and acceptance, and advice on dealing with PWDs' memory and behavior problems; while for PWD at mild stage, priority should be on tips for handling PWDs' memory and behavior problems and the emerging functional dependence.…”