International Journal of Care and Caring • vol XX • no XX • 1–18 • © Policy Press 2023

Print ISSN 2397-8821 • Online ISSN 2397-883X • https://doi.org/10.1332/23978821Y2023D000000006

Accepted for publication 13 September 2023 • First published online 11 October 2023

research article
Early-onset familial Alzheimer’s disease: do
socio-demographic variables differentiate family
caregivers on social support, self-efficacy and
coping strategies?
Maritza García-Toro, maritza.garcia@uniremington.edu.co
Corporación Universitaria Remington, Colombia

María Cruz Sánchez-Gómez, mcsago@usal.es

Ariana Castillo-Alzuguren, acal@usal.es
University of Salamanca, Spain

There is an urgent need to deepen understanding of the particular experience of family caregivers
of people with early-onset familial Alzheimer’s disease. In this effort, we aim to identify the
socio-demographic variables associated with social support, self-efficacy and coping strategies.
Not belonging to the family lineage carrying the disease-causing mutation, having secondary or
professional education, and caring for a relative in the early stages of dementia are associated with
better coping tools. However, belonging to the family lineage carrying the mutation increases the
use of passive coping, escape or emotional discharge, which risks adverse psychological outcomes.

Key words family caregiving • early-onset familial Alzheimer’s disease • coping strategies •
self-efficacy

To cite this article: García-Toro, M., Cruz Sánchez-Gómez, M. and Castillo-Alzuguren, A. (2023)
Early-onset familial Alzheimer’s disease: do socio-demographic variables differentiate family
caregivers on social support, self-efficacy and coping strategies?, International Journal of Care
and Caring, XX(XX): 1–18, DOI: 10.1332/23978821Y2023D000000006

Introduction
In Latin America, it is expected that the number of people with dementia will rise
from 7.8 million in 2013 to over 27 million by 2050 (Custodio et al, 2017). Taking
into account that it is an incurable and irreversible condition, and due to its high
personal, social, family and economic impact, various sectors have focused their
efforts on designing public policies and programmes to help this population, as well
as finding treatments that help to improve the quality of personal and family life.
However, there is still a misperception of dementia, especially Alzheimer’s disease, as
a condition exclusive to older people, which has made young adults with the disease
and their families remain invisible.

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In 2020, the Alzheimer’s Association warned that 50 per cent of primary care
physicians who responded to the ‘Alzheimer’s Association Primary Care Physician
Dementia Care Training Survey’ had reported not feeling prepared to handle the
increasing number of patients with Alzheimer’s and other dementias. Close to 39
per cent reported that they ‘never’ or only ‘sometimes feel comfortable’ making a
diagnosis of Alzheimer’s or other dementias. Almost 27 per cent reported that they
‘never’ or only ‘sometimes feel comfortable’ answering patients’ questions about
Alzheimer’s or other dementias. A total of 22 per cent of all general practitioners
had no residency training in dementia diagnosis and care, and of the 78 per cent
who received training, 65 per cent reported that the training was ‘very little’. These
figures are particularly important if we consider that some of these professionals could
eventually be confronted with a little-known form of Alzheimer’s, such as early-onset
familial Alzheimer’s disease.
Early-onset Alzheimer’s disease affects people before the age of 65. Despite
presenting the same symptoms and following the same stages as late-onset Alzheimer’s
disease, it is characterised by a faster and more aggressive progression.The age of onset
plays a crucial role in shaping the cognitive trajectories of people with this condition,
and it has been observed that an earlier onset is associated with a more pronounced
decline in non-memory domains. Furthermore, anxiety, nocturnal behaviours and
motor impairments have been found to be more severe compared to late-onset
Alzheimer’s disease throughout the course of the illness (Tellechea et al, 2015;
Falgàs et al, 2022; Tort‐Merino et al, 2022).
Most early-onset Alzheimer’s disease is sporadic, while some is caused by inherited
genetic mutations. That is the case with early-onset familial Alzheimer’s disease.
According to Sadovnick et al (1988), the first reports of familial Alzheimer’s disease
were made in 1929 and 1932 by Flügel and Schottky, respectively, when hereditary
transmission was presumed from the reconstruction of genealogies. Nowadays, the
diagnosis includes clinical evaluation, the detection of people affected through
several generations and genetic tests to look for a documented pathogenic variant
in one of the genes associated with the disease. This form of dementia follows an
autosomal dominant inheritance pattern and accounts for less than 1 per cent of
all Alzheimer’s disease cases (Harvey et al, 2003). Due to the low prevalence, many
primary care professionals do not recognise the signs of dementia in young adults.
When consultations for memory complaints occur in young adults, the symptoms are
often attributed to stress, depression, exhaustion or even menopausal changes (Harris
and Keady, 2004; Baum, 2014). In fact, a study of 61 people with early-onset dementia
conducted in Ireland showed that doctors had only made a definitive diagnosis in
ten of the patients (Haase, 2005).
Although it is a rare condition, around the world, there are several family lineages
that have lived with this incurable and irreversible condition for generations. In
Belgium, two large families were identified based on clinical and neuropathological
data (Martin et al, 1991; Van den Bossche et al, 2017), and there is a family lineage
in the southern region of Italy (Bergamini et al, 1991; Rainero et al, 1994). In Latin
America, cases of early-onset familial Alzheimer’s disease have been discovered in
Argentina (Mangone et al, 1995), Chile (Sinning et al, 2010), Cuba (Bertoli-Avella
et al, 2002), Peru (Cornejo-Olivas et al, 2014) and Mexico, which has notable cases,
including the Jalisco mutation in PS1, affecting families in Jalisco, Guadalajara and
Southern California (Murrell et al, 2006).

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However, the most extensive lineage has been identified in Antioquia, a region
located in north-western Colombia (Lopera et al, 1994). The causative mutation is
found in the gene that encodes presenilin 1 (PS1) and has been identified as an E280A
mutation.This mutation has a penetrance close to 100 per cent, so most carriers will
develop the disease during mid-adulthood. It is presumed that there are over 1,800
carriers of the E280A mutation among the 6,000 descendants of these families, though
many of them have not yet reached the age of onset of the symptoms (Fuller et al,
2019). This scenario, which is unique in the world, has brought challenges not only
for the people who live with the disease but also for their families, who, primarily,
assume the caregiving while also dealing with the emotional burden of being possible
carriers of the mutation (Wain et al, 2009; García-Toro et al, 2020).

The family caregiver and early-onset familial Alzheimer’s disease

In 2016 in the US, 15.9 million family and friends provided 18.2 billion hours
of unpaid care to people with Alzheimer’s disease and other forms of dementia
(Alzheimer’s Association, 2020). This contribution is economically valued at about
US$244 billion but is invaluable in terms of its social role in helping to keep the
person with dementia in their family environment and to maintain contact with their
usual environment, giving them confidence, security and preserving affective ties.
Even though adverse psychological outcomes related to care have been reported in
all types of dependency situations regardless of their aetiology, it is important to point
out the specific challenges faced by a family caregiver of a person with dementia. One
of the most significant challenges is the loss of intimacy and shared experiences that
used to be part of the relationship between the caregiver and their relative. Another
is related to the progression of the disease, which implies challenging behaviours
that are difficult to manage and neuropsychiatric symptoms that emotionally affect
the caregiver because they experience the feeling of progressively losing a loved one
who is still physically there (Gelman and Greer, 2011; Alzheimer’s Association, 2020).
In the case of early-onset Alzheimer’s disease, the same challenges are faced, but there
are some important qualitative differences. For example, the diagnosis is experienced
as a disruptive event, even more so than with late-onset Alzheimer’s. This makes
it difficult for the family to assimilate the diagnosis, and the abrupt way in which
they must assume their new role as caregivers makes them perceive themselves as
less prepared to face this task (Ducharme et al, 2014). Often, family caregivers for a
person with early-onset dementia either are studying or have an active working life,
so their life project is seriously affected (Kaiser and Panegyres, 2006; Ducharme et al,
2013). For their part, children report a reversal of family roles, the spouses experience
a redefinition of the marital relationship and the family readjustment becomes more
noticeable (Harris and Keady, 2004; Flynn and Mulcahy, 2013; Roach et al, 2016;
Wawrziczny et al, 2017). In addition, comparative studies have reported higher
levels of burden and a greater impact on the quality of life of caregivers of people
with early-onset dementia (van Vliet et al, 2010; Lockeridge and Simpson, 2013;
Wang et al, 2020).
While there are similarities in terms of assistance and instrumental aspects, family
caregiving for people with early-onset Alzheimer’s disease caused by the E280A
mutation has some distinct characteristics. These can be attributed to the specific
caregiving context and the psychological state of the caregiver. As these families

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have been facing the disease for several generations, caregiving is shaped as a
transgenerational experience that allows for the informal construction and transmission
of knowledge about caregiving and the disease. However, the persistent burden
of caring for multiple family members (sometimes concurrently) and the fear of
inheriting the disease can overwhelm the caregiver’s internal resources to effectively
respond to the situation (García-Toro, 2019).

Coping with caregiving

Several investigations on family caregiving in relation to Alzheimer’s disease have
identified psychological and social factors that play a protective role in mitigating
negative care outcomes. Some of these studies have focused on such aspects as social
support, coping strategies and self-efficacy.
In broad terms, social support encompasses the human and material resources
available to individuals or groups to cope with challenging situations. It involves:
social exchanges that express emotional concern through love, trust and empathy;
instrumental assistance, that is, providing direct help, goods and services; information
to solve problems; and evaluation, which offers external judgements or feedback
(Suárez, 2011). Research with family caregivers of people with dementia indicates
that emotional support moderates the relationship between a stressor (such as family
income) and depressive symptoms (Huang et al, 2006). Also, lower caregiving burden
was associated with higher perceived social support, positive caregiving experience
and caregiving intensity among informal caregivers of people living with dementia
(Nemcikova et al, 2023). The assistance provided by family members, friends and
professionals is crucial for caregivers’ performance and their sense of involvement
(Gaioli et al, 2012).
Coping strategies refer to the cognitive and behavioural efforts employed by
individuals to manage the demands of a stressful situation and alleviate emotional
distress. The effectiveness of these strategies depends on the specific context, and
no single coping style is inherently superior to others. Problem-focused coping is
influenced by the caregiver’s perception of the possibility of changing the stressful
situation, with information-seeking and problem-solving actions being associated with
lower burden, while higher utilisation of emotional discharge is linked to an increased
burden (Tartaglini et al, 2010).Another study indicates a significant negative association
between the use of positive strategies, such as reappraisal and problem solving, and
caregiver burden.Additionally, positive approaches were found to be negatively related
to the psychological well-being of caregivers, while emotion-focused coping strategies
were positively associated with depressive symptoms (Papastavrou et al, 2011).
Self-efficacy pertains to an individual’s perception of their capabilities to achieve
specific goals and their judgement of their competence in a given situation.
Performance in a task relies not only on knowledge but also on belief in one’s ability
to handle it. In caregiving, self-efficacy refers to the perception of personal control
over caregiving issues, influencing the identification and use of coping resources.
Caregivers with high self-efficacy take care of themselves, seek respite, approach
tasks positively and address disruptive thoughts and negative emotions (Steffen et al,
2002; Crellin et al, 2014). Research indicates that higher self-efficacy in controlling
negative thoughts leads to positive outcomes and reduced burden in dealing with
a care recipient’s behavioural problems. Self-efficacy in obtaining respite directly

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affects burden and depression levels, while self-efficacy in responding to disruptive

behaviours relates to positive benefits but does not moderate burden and depression
(Semiatin and O’Connor, 2012; Cheng et al, 2013).
Nevertheless, there has been limited research examining the influence of socio-
demographic factors on these variables. Socio-demographic factors, including age,
gender, education and employment status, may influence the availability of resources
and support systems for caregivers. Additionally, these factors can impact caregivers’
inclination to seek and utilise available support. For instance, younger caregivers face
additional challenges in balancing care responsibilities with work or studies, experience
higher burden, and perceive more intense socio-economic consequences than other
caregivers. A higher level of education is associated with an increased use of external
support services and residential care, as well as greater dementia knowledge and higher
health literacy for evaluating information (Ruiz-Adame et al, 2017; Crawley et al,
2022). Also, the difficulty in balancing paid employment and long-term caregiving
causes women to perceive a greater loss of opportunities (Akpinar et al, 2011).
The aim of this study is to assess social support, self-efficacy and coping strategies
among family caregivers of people with early-onset Alzheimer’s disease caused by the
E280A mutation, and to identify the socio-demographic factors associated with these
variables. Understanding these associations in lineages affected by a form of hereditary
Alzheimer’s disease contributes to the design of relevant interventions tailored to the
specific profile of these caregivers. This will result in improved caregiving and self-
care skills, as well as better coping abilities.

Variables
For the variables, the socio-demographic factors of caregivers that have shown an
impact on the caregiving experience were chosen: gender and educational level
(Takano and Arai, 2005; Kaiser and Panegyres, 2006; Akpinar et al, 2011). We also
explore the factor of belonging/not belonging to the family lineage carrying the
mutation, under the hypothesis that genetic risk may affect the measured outcomes.
Besides this, factors associated with care were also considered: weekly time and number
of years dedicated to care; whether or not they receive some help with care; and the
phase of the disease according to the criteria of Feldman and Woodward (2005). As
already mentioned, the dependent variables were coping strategies, self-efficacy and
perceived social support.

Method
Methodology and design

This study is developed under a cross-sectional observational design. Ethical approval

was granted by the Bioethics Committee of the Faculty of Medicine of the University
of Antioquia, and the written informed consent of all participants was obtained before
starting the collection of data. This research and the informed consent were made
according to Resolution 8430 of 1993 of the Ministry of Health and Social Protection
(which regulates research in Colombia), as well as Law 1090 of 2006 (Deontological
and Bioethical Code in Psychology). The study is considered to be of minimal risk,
though the psychological discomfort that the participants could experience when

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talking about sensitive topics was considered as a potential risk. For this reason, the
data collection was carried out by a professional in psychology trained to provide
psychological support if required. Respect for the integrity, dignity and well-being
of the participants was preserved.

Participants

Non-probabilistic convenience sampling was carried out. The participants were

selected from the Neuroscience Group of Antioquia (GNA for its abbreviation in
Spanish) database, identifying 63 potential participants who met the inclusion criteria.
For the purpose of ensuring safety and accessibility, participants were specifically
recruited from urban areas. The following inclusion criteria were considered: (1)
being the primary caregiver of a person with early-onset Alzheimer’s disease caused
by the E280A genetic mutation; (2) currently serving as a caregiver at the time of
the investigation; (3) having a familial relationship with the care recipient; and (4)
not receiving financial compensation for their caregiving duties. Therefore, family
caregivers who received any form of financial remuneration for their caregiving or
provided sporadic care for their relatives were not considered for the study.Additionally,
individuals who had recently placed their family member in a long-term care service
and were therefore not actively acting as caregivers during the data-collection
period were excluded. After the initial telephone contact, two caregivers declined
to participate and 11 did not meet the inclusion criteria. The final sample consisted
of 50 family caregivers. Data collection took place through a single pre-arranged
home visit per caregiver, scheduled to accommodate the caregiver’s convenience and
minimise potential disruptions to their daily responsibilities.

Instruments

Socio-demographic survey and GNA database

Such information as gender, age, educational level, marital and employment status,
time dedicated to care, and relationship with the care recipient were obtained from
the GNA database and the participants themselves.

The Coping Strategies Scale – Modified Scale

The Coping Strategies Scale – Modified Scale (EEC-M) is an instrument based on
the Revised Coping Strategies Questionnaire by Chorot and Sandín (1993), which
has been adapted and validated in Colombia by Londoño, Pérez and Murillo (2009).
The scale demonstrates good internal consistency, with a Cronbach’s alpha of 0.847.
The scale has 69 sentences and explores 12 factors related to psychological resources
and actions aimed at solving problems or stressful situations: problem solving, seeking
social support, waiting, religion, emotional avoidance, professional support, aggressive
reaction, cognitive avoidance, positive reappraisal, express coping difficulty, denial and
autonomy. The scoring scale is from 1 (‘never’) to 6 (‘always’). Standardised scores
were used.

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Revised Scale for Caregiving Self-efficacy (Steffen et al, 2002)

This scale measures perceived self-efficacy for care tasks. The original version
is composed of three dimensions: obtaining respite; responding to disruptive
patient behaviours; and controlling upsetting thoughts. The three subscales
demonstrate strong internal consistency and satisfactory test–retest reliability,
with Cronbach’s alphas exceeding 0.80. For this study, content validation was
performed through expert judgement, as there is no adapted version of this scale
in Colombia (García-Toro et al, 2017). Two new dimensions were added because
they were considered important for the research context: health management;
and providing intensive support to people in a situation of total dependence. The
response scale was changed from 0 to 100 per cent to 0–10 because it is more
familiar to the participants.

Medical Outcomes Study (Sherbourne and Stewart, 1991)

The Medical Outcomes Study (MOS) instrument measures perceived social support. It
was adapted and validated in the Colombian population by Londoño et al (2012).The
test demonstrates favourable internal consistency, with Cronbach’s alpha coefficients
ranging from 0.921 to 0.736 across the components.This version consists of 20 items
grouped into four subscales that evaluate affective support, emotional/informational
support, instrumental support and positive social interaction. The first item is open-
ended (How many close friends or relatives do I have?), and 19 are Likert-type
questions (1 = ‘never’ to 5 = ‘always’). Standardised scores were used.

Data processing – statistical analysis

As a preliminary step, the Shapiro–Wilk statistic was used to explore the adherence
of the variables to a standard normal distribution. Since the variables did not follow
a normal distribution, the inferential analysis was conducted using non-parametric
tests, specifically, the Mann–Whitney U and Kruskal–Wallis tests. These tests were
employed to examine potential differences in the means of social support, self-
efficacy and coping strategies based on the socio-demographic characteristics of the
caregivers.Additionally, to check at what specific levels of the variables these differences
occur, Dunn’s post hoc test with Bonferroni correction was used. Statistical analyses
were carried out with the SPSS version 23, assuming that the differences found are
significant with a significance level of 0.05.

Results
Table 1 summarises the socio-demographic information of the caregivers.The sample
is made up mostly of women. The age range of caregivers is quite wide. Regarding
kinship, more than a half belong to a family lineage carrying the E280A mutation.
Most caregivers have secondary and professional studies, and to a lesser extent, there
are caregivers with elementary studies.There is a higher representation of housewives
in the sample. A prolonged dedication to care is observed both in weekly hours and
in years. Most caregivers report receiving some kind of help with care.

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Table 1: Socio-demographic description of the study participants

n %
Gender Age
Female 42 84 Mean ± SD 45.66 ± 16.8
Male 8 16 Min–max 18–80
Educational level Years dedicated to caring
Primary education 11 22 Mean ± SD 5±4
Secondary education 21 42 Min–max 0.3–15
Professional studies 18 36 Hours per week dedicated to care
Employment situation Mean ± SD 119.4 ± 66.1
Housewife 20 40 Min–max 8–168
Employee 12 24
Independent worker 8 8
Unemployed 4 16
Pensioner/retiree 4 8
Student 2 4
Belonging to the carrier family lineage
Belong to the E280A family 30 60
Not belong to the E280A family 20 40
Do you receive any kind of help?
Yes 40 80
No 10 20

Notes: Regarding the person with dementia, 69.5 per cent are women and 30.5 per cent are men. Ages
range from 43 to 69 years (M = 54.7; SD = 6.4). A total of 34.8 per cent are in the early stage of the
disease, 17.4 per cent are in the middle stage and 47.8 per cent are in the late stage.

The initial results show that the coping strategies with the highest mean scores are:
problem solving, religion and positive reappraisal (see Table 2). In the autonomy
strategy, atypical cases are identified in high scores, but it is one of the least-used
strategies, along with expression of coping difficulty.
Since the Revised Scale for Caregiving Self-efficacy offers the answer option ‘not
applicable’, some subscales were not answered by all the caregivers.Thus, the subscales
of obtaining respite, controlling upsetting thoughts and health management were
applied to the 50 participants (marked with an asterisk in the table), while self-efficacy
when responding to disruptive patient behaviours was applied to 25 caregivers (72
per cent women and 28 per cent men) because the person with dementia does not
present challenging behaviours in the other cases. Likewise, the subscale of provide
intensive support was applied to 27 caregivers (96 per cent women and 4 per cent
men) whose relatives require generalised and extensive support. The results show
a concentration of responses in the high scores in almost all dimensions, with the
exception of obtaining respite.
A perception of medium social support is identified, with higher scores in affective
support. Regarding gender, due to the distribution of the sample, it was only possible
to examine the differences in some variables. The results were significant in relation
to self-efficacy when responding to disruptive behaviours (z = –2.3; p = .02).

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Table 2: Descriptive statistics of outcomes measured

Coping strategiesa (N = 48) Mean ± SD Median Range

Problem solving 55 ± 12.3 56.5 29.2–74.4
Seeking social support 51.1 ± 10.6 50.3 30.2–72.9
Waiting 50.6 ± 12.6 50 32.0–82.7
Religion 61.1 ± 10.1 61.4 34.8–73.7
Emotional avoidance 51.8 ± 14.2 51.3 27.6–80.3
Professional support 56.6 ± 14.2 53.5 39.3–83.9
Aggressive reaction 49.0 ± 11.4 47.6 34.9–82.0
Cognitive avoidance 49.9 ± 12.3 48.1 27.8–78.8
Positive reappraisal 55.2 ± 10.5 56.6 25.2–71.5
Expression of coping difficulty 42.3 ± 7.9 41 25.4–56.7
Denial 46.1 ± 10.8 47.5 32.4–68.8
Autonomy 44.1 ± 8.7 43.5 32.9–68.6
Self-efficacy for caregivers (N = 50)
Obtaining respite* 5.7 ± 2.9 5.5 0–10
Responding to disruptive behaviours 8.3 ± 1,7 9 5–10
Controlling upsetting thoughts* 7.6 ± 1.7 7.8 4.2–10
Health management* 7.9 ± 2.9 9 0–10
Provide intensive supports 8.5 ± 1.0 8.6 6.4–10
Social supporta (N = 50)
Emotional/informational support 42.3 ± 13.7 44.2 14–61
Instrumental support 40.6 ± 15 40.8 13–60
Positive social interaction 40.3 ± 16.3 42.4 12–61
Affective support 47.2 ± 13.9 51.2 11–59

Notes: a Typical scores. * Subscales answered by all 50 respondents.

According to the caregiver belonging/not belonging to the family lineage carrying

the E280A mutation, inferential statistical analyses reveal significant differences in
self-efficacy when responding to disruptive behaviours (z = –2.84; p = .004) and
controlling upsetting thoughts (z = –2.01; p = .04). Likewise, differences were found in
the use of problem-solving coping strategies (z = –2.25; p = .024), positive reappraisal
(z = –2.08; p = .037) and denial (z = –2.29; p = .024).
According to educational level, the differences were significant for positive
social interaction (X2 = 7.10; p = .03), seeking social support (X2 = 5.67; p =
.05), waiting (X2 = 10.24; p = .006), emotional avoidance (X2 = 5.81; p = .05)
and expression of coping difficulty (X2 = 7.95; p = .01). In relation to the stage of
the disease, differences were found for self-efficacy to control upsetting thoughts
(X2 = 7.95; p = .02) and the coping strategies of waiting (X2 = 3.31; p = .04)
and aggressive reaction (X2 = 8.24; p = .01). Regarding those who receive or do
not receive some kind of help, differences are observed in instrumental support
(z = –2.2; p = .028) (see Table 3). No associations were found between the time
dedicated to care (in hours per week or years) and self-efficacy, social support
or coping strategies.

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Discussion and conclusions

This study has aimed to examine social support, self-efficacy and coping strategies
among family caregivers of individuals with early-onset Alzheimer’s disease caused
by the E280A mutation.Additionally, it has sought to identify the socio-demographic
factors that may be linked to these variables.
A highlighted finding is that, as in research carried out in different countries, the
majority of people with dementia receive care from a family member, in this case,
the spouse and children. At the same time, results are consistent with the literature
on the essential role of women (Alzheimer’s Association, 2020), as they are the
ones who mostly take care of a relative. This phenomenon can be explained by the
gender roles that still prevail in many Western societies. Traditionally, women take
care of family and home, while men continue to perceive themselves as providers,
spend more time away from home and are less likely to give up their work activity
to dedicate themselves to care.
Regarding the time dedicated to care, a high weekly dedication is evident, as well as
prolonged care over the years.This limits participation in other activities and projects,
as well as exposing these caregivers to high levels of burden (Teahan et al, 2018).
In relation to the study variables, caregivers who do not belong to a lineage
carrying the E280A mutation report greater self-efficacy to respond to disruptive
behaviours and cope with negative thoughts associated with caregiving. They also
appeal more to problem solving and positive reappraisal as strategies to cope with
stress. In contrast, caregivers belonging to the family lineage carrying the mutation
use denial as a coping strategy significantly more. It is possible that this mechanism
allows them to tolerate the emotional distress, as in these caregivers, there is also the
concern about being carriers of the mutation that gives rise to the disease (Wain
et al, 2009; García-Toro et al, 2020).
When the person with dementia is in the late stage of the disease, the participants
obtain significantly lower scores on self-efficacy for coping with upsetting thoughts
compared to those in the initial and moderate stages. In this regard, it is worth noting
that this dimension of the Scale for Caregiving Self-efficacy enquires about negative
thoughts towards other family members, the future and the difficult decisions about
forgoing other activities that caregiving often implies. In the last two stages of the
disease, caregivers score significantly higher in the coping strategies of waiting and
aggressive reaction. This could be explained by the exhaustion due to long-time
caring, as well as the marked deterioration of the person with dementia. It could
be thought that over time, caregivers can better adapt to their role, but the truth
is that the progression of a neurodegenerative disease causes the demands of care
to constantly change (as mentioned by a female caregiver in one of our previous
reports) (García-Toro et al, 2020). In this way, caring becomes more difficult from
an instrumental point of view and the repercussions on the physical and emotional
levels are more evident.
With respect to this, research reports that in the advanced stages of the disease,
when the person with dementia has lost their ability to make decisions, the caregiver
faces the additional role of deciding for their loved one when carrying out legal and

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Table 3: Analysis of the differences in means of the variables in relation to socio-

demographic factors
Gender Female (N = 18) Male (N = 7)
Mean ± SD Median IQR Mean ± SD Median IQR Z p value
Self-efficacy 4.85 + 1.69 8 3.22 7.45 + 1.12 10 0.8 –2.3 .02a
to respond
to disruptive
behaviours
Kindship Belong to a E280A family Does not belong to a
(N = 20) E280A family (N = 30)
Mean ± SD Median IQR Mean ± SD Median IQR Z p value
Self-efficacy 9.3 ± 1.2 10 1 7.5 ± 1.6 7.5 3.3 .004a
to respond –2.84
to disruptive
behaviours
Self-efficacy 8.2 ± 1.5 8.6 2.6 7.2 ± 1.6 7.2 2.8 –2.01 .04a
to control
upsetting
thoughts
Problem 60.1 ± 11.8 62.5 19.04 52.3 ± 51.7 18.4 –2.24 .02a
solving 11.76
Positive 59.3 ± 8.9 62.2 18.5 52.5 ± 52.9 14.8 –2.08 .03a
reappraisal 10.6
Denial 41.6 ± 9.9 38.4 18.18 48.9 ± 47.5 16.6 .02a
10.6 –2.25
Receive help Yes (N = 40) No (N = 10)
Instrumental 43.08 + 13.9 46.7 22 30.8 + 15.5 30.5 25.7 –2.2 .028a
support
Educational Primary education Secondary education Professional education
level (N = 11) (N = 21) (N = 18)
Mean ± SD Median IQR Mean ± SD Median IQR Mean Median RIQ X2 p
± DT value
Positive social 28.3 ± 15.7 24.2 27.2 43.1 ± 48.4 36.3 44.2 45.4 17.4 7.10 .03b
interaction 15,9 ±
14.4
Search for 44.1 ± 7.2 44.2 11.8 53.6 ± 52.1 14.6 52 ± 50.9 16.4 5.67 .05b
social support 11.5 9.7
Waiting 58.6 ± 10.3 57.3 16 51.6 ± 50.6 14.6 44.5 38.6 17.3 10.24 .006b
10.7 ±
13.3
Emotional 62.1 ± 12.2 62.5 24.3 49.8 ± 48.6 22.3 48 ± 51.3 20.3 5.81 .05b
avoidance 15.3 11.3
Express 48.1 ± 7.5 48.3 15.6 41.9 ± 7.6 42 9.3 39.2 37.9 5.2 7.95 .01b
coping ±
difficulty 6.8
Stage of the Early (N = 15) Middle (N = 10) Late (N = 25)
disease

(Continued)

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 Maritza García-Toro et al

Table 3. Continued
Gender Female (N = 18) Male (N = 7)
Self-efficacy 8.1 ± 1.24 8.2 1.5 8.5 ± 1.5 8.9 2.97 6.9 ± 6.6 3.45 7.95 .02b
to control 1.7
upsetting
thoughts
Waiting 44.6 ± 9.19 44 12 56.8 ± 54.6 20.6 51.7 52 17.3 5.96 .04b
14.4 ±
12.4
Aggressive 43.2 ± 8.1 40.7 9.8 48.2 ± 12 46.6 16.6 53.1 50.5 9.8 8.24 .01b
reaction ±
11.6

Notes: a Mann–Whitney test; b Kruskal–Wallis test. IQR: interquartile range.

medical procedures (such as authorising an invasive medical procedure). Likewise, they

usually take charge of the domestic economy and obtaining and managing technical
and economic aid.This ‘indirect care’ is also a source of burden and requires emotional
resources for its management (Wilkinson and Lynn, 2005; De la Cuesta, 2009).
On the other hand, participants who have completed secondary and professional
studies tend to have more positive social interactions and to seek more social support.
In contrast, those who have carried out primary studies tend more to use the strategies
of waiting, emotional avoidance and expressing coping difficulty. In addition, those who
receive some type of help report significantly more instrumental support than affective
or informational support. However, this can be explained for the interviewed caregivers,
as ‘help’ and ‘support’ are associated with respite from their care functions, not emotional
support. No association was found between educational level and self-efficacy, unlike
Phongtankuel et al (2022), who observed that lower preparedness was associated with lower
self-efficacy in controlling upsetting thoughts and responding to disruptive behaviours.
These findings should be taken into consideration, as a study showed that positive
coping strategies (such as finding solutions and positive reappraisal) are negatively
correlated with burden and are the most powerful to face stress, both in terms of
predicting depression and in terms of moderation of the effect of burden on depression
(Papastavrou et al, 2011). Furthermore, in people with early-onset dementia, adaptive
coping strategies, such as acceptance, seeking social support, cultivating gratitude,
optimism and problem solving, are beneficial for both caregivers and people with
dementia (Bannon et al, 2022). On the contrary, caregivers who use such strategies
as escape, avoidance and emotional discharge would be at greater risk of developing
anxiety, depression and burden. Thus, for reasons to be established, in our study,
caregivers with a lower educational level tend to use less effective coping strategies
and may be at greater risk of adverse psychological outcomes.
Finally, our results show that no socio-demographic factor was associated with self-
efficacy to obtain respite, a variable in which most of the participants obtained low
scores. This is relevant because a caregiver who has the opportunity and the ability
to take a break from their role will face the tasks of care in a more positive way and
will see their physical and mental health less compromised.
In short, the results indicate that belonging or not to a lineage carrying the mutation,
educational level, receiving help, and the stage of the disease are the factors with
the greatest importance for self-efficacy, social support and coping strategies in this
collective. Not belonging to the carrier family and having a higher level of studies

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 Early-onset familial Alzheimer’s disease

are factors that are associated with better coping tools.These caregivers tend to have
more skills in responding to problems, deal more effectively with emotional distress
and have more effective social support.

Implications for practice

The need for flexible and diversified support programmes for caregivers is becoming
increasingly evident. These programmes should include both common modules,
addressing general aspects of instrumental and assistive care, and personalised modules
that consider the specific challenges faced by caregivers, their socio-demographic
characteristics and their unique caregiving context. Understanding the intricate
relationship between socio-demographic factors and the diverse variables involved
in caregiving allows for customised support interventions to meet the distinct needs
of different caregiver groups. Moreover, it aids in identifying potential disparities in
access to support and resources.

Limitations of the study

The limitations of this study include the small sample size, which restricts the
generalisability of the results.Additionally, there is a possibility of the influence of implicit
social desirability bias in most of the data collected through psychological questionnaires.
Future studies could aim to recruit larger and more diverse samples, ensuring a balanced
participation of male and female caregivers, to enhance the generalisability of the findings
and explore the role of gender in caregiving experiences and outcomes.
The findings of this study contribute to our understanding of the psychological
and contextual factors that influence the well-being of family caregivers of people
with young-onset dementia, particularly those affected by a genetic predisposition.
More research is needed to explore whether these differences impact the health and
well-being of the person with dementia.

ORCID iD
Maritza García-Toro https://orcid.org/0000-0002-9190-670X
María Cruz Sánchez-Gómez https://orcid.org/0000-0003-4726-7143
Ariana Castillo-Alzuguren https://orcid.org/0000-0001-9754-6410

Funding
This work was supported by the Santander Scholarship for Doctoral Studies for Latin
American Students.

Acknowledgements
The authors would like to thank the Neurosciences Group of Antioquia led by Dr
Francisco Lopera for its support during this research.The authors would also like to thank
the families who kindly participated in this study.

Conflict of interest
The authors declare that there is no conflict of interest.

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