Page 124 - GHES-2-3

Global Health Economics and
Sustainability
Positive and negative aspects of caregiving

affected and also serving as the primary caregivers for centered their attention on the relationships between these
people with Alzheimer’s disease (PWAD) more often negative aspects of caregiving, with the most recurrent
than men. Economically, the cost of caring for a relative finding being the important role played by burden in the
with Alzheimer’s disease at home was estimated at USD prediction of psychological distress (Grano et al., 2017; Liu
650 billion worldwide, based on an average of 5 h of care et al., 2020).
and supervision per day (WHO, 2023). In general, the high levels of burden, anxiety, and
Feldman and Woodward (2005) proposed and depression associated with caring for PWAD predict a low
described three stages in the development of Alzheimer’s probability of experiencing positive emotions (Pinquart
disease that directly affect both the care recipient and their & Sörenem, 2006). However, two key advancements have
caregivers. The progression of this neurological disease is been noted in the investigation of the positive aspects
as follows: of caregiving: The first review of positive aspects related
(i) First stage: Characterized by forgetfulness, mood to caregiving, performed by Kramer (1997), and the
swings, and apathy, while daily and work-related development of positive psychology, which focused on
activities remain mostly intact. Caregiver tasks during positive rather than negative aspects of human functioning
this stage involve supervision and support. (Seligman & Csikszentmihalyi, 2000). Using Lazarus
(ii) Second stage: Defined by memory loss, forgetting & Folkman’s stress and coping model (1984), Kramer
recent events, behavior problems, progressive lack proposed that both strain and gain could produce positive
of movement coordination, and communication or negative indicators, leading to positive and negative
and language impairment that makes it difficult to outcomes in the well-being of caregivers. In parallel,
communicate with the patient. Some instrumental Folkman (1997) proposed that both positive and negative
activities of daily living are compromised, rendering emotions could arise in response to stressful situations,
the person with dementia unable to drive or use while Rapp & Chao (2000) criticized the excessive focus
any transport without supervision. At this stage, the on negative aspects and the scarcity of studies including
caregiver needs to be with the care recipient most of positive aspects of caregiving. In the last two decades, there
the time, assisting with nearly all activities. has been an increasing amount of research focused on the
(iii) Third stage: All aspects of the PWAD’s life are positive aspects of caregiving, leading to the development
affected. Behavior can become unpredictable, and of various scales and tools to measure these aspects (Schulz
communication, language, and basic activities are et al., 2003; Wang et al., 2018; Wennberg et al., 2022;
severely affected, resulting in total dependency. Yap et al., 2010). Different positive variables related to
Although recent and long-term memory is lost, caregiving have been identified as playing a relevant role
emotional memory is partially retained, allowing in caregiver well-being (Carbonneau et al., 2010), such as
patients to be aware of the care, help, and love they happiness (van Campen et al., 2013), perception of gain
receive. This stage is particularly challenging for or benefits (Tennen & Affleck, 2002), and quality of life
caregivers, who must assist the PWAD with almost (Glozman, 2004).
every activity, dedicating more and more time to Happiness has been considered one of the best measures
the relative. This stage often leads to symptoms of subjective well-being, closely linked to physical and
of depression in the caregiver, associated with mental health (Argyle, 2001). There is also an assumption
anticipatory grief, which affects at least 75% of that burden is directly and negatively associated with
caregivers and is reported as one of the prominent happiness, such that higher levels of burden decrease
difficulties in the final stages of Alzheimer’s dementia happiness in caregivers (Chappell & Reid, 2002). However,
(Frank, 2008).
in the study performed by van Campen et al. (2013), it was
The development of Alzheimer’s disease, as described found that caregivers who provided care for <6 h a week
above, makes caring for a relative with this disease different reported higher happiness levels than non-caregivers,
from other types of caregiving (Brodaty & Donkin, 2009; whereas caregivers who provided care for more than 11 h
Campbell et al., 2008). The negative aspects of caregiving a week reported lower happiness levels. In the same line, a
have been extensively studied. Variables such as stress, comparison between caregivers of cancer patients and the
burden, anxiety, and depression are consistently reported general population by de Camargos et al. (2020) revealed
as factors that increase the risk of psychiatric disorders and that caregivers were happier than the general population.
significantly affect caregivers’ mental health (Campbell From these studies, we could conclude that caring for
et al., 2008; del Pino-Casado et al., 2021; Geng et al., 2018; fewer hours positively affects the happiness of caregivers.
Loh et al., 2017; Sallim et al., 2015). Several studies have However, caring for <6 h a week is not typical for caregivers

Volume 2 Issue 3 (2024) 2 https://doi.org/10.36922/ghes.3145