‘My backpack is so heavy’: Experiences of Latino Caregivers of Family with Early-Onset Alzheimer’s

Abstract

BACKGROUND/OBJECTIVES:

While it is well-known that caregiving can have adverse effects on the physical and mental health of informal caregivers and their families, caregivers of those with early-onset Alzheimer’s Disease (EOAD) may have distinct needs. Little is written about the experiences of Latino caregivers of family members with EOAD, especially inherited forms. This study’s objective was to explore the experiences and needs of Latino caregivers of persons with EOAD.

METHODS:

Five focus group discussions (FGDs) were conducted among 27 informal caregivers of Latinos with EOAD who were recruited through an AD clinic in Los Angeles.

RESULTS:

The stress of caregiving was compounded by other pressures and worries, such as taking care of young children, providing financially for family, caregivers’ own co-morbidities, and contemplating their own risk of inheriting EOAD. Resources for monolingual Spanish speakers were scarce. Participants had two primary unmet needs: information and support services. Participants lacked information about how to provide appropriate care, which heightened fears. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD was also common. Recommended topics for informational campaigns included how-to videos on caring for a loved one but also topics related to self-care for caregivers.

CONCLUSIONS:

Our results underscore the need to tailor programs for caregivers of family members with EOAD. Educational campaigns could help to dispel myths and misconceptions, reduce stigma associated with EOAD, and encourage more people to seek timely care. Additional psychosocial support, such as support groups, could build solidarity and self-efficacy. Better access to dual-language information and support could encourage early help-seeking but also improve caregivers’ quality of life as they deal with long-term caregiving responsibilities.

1. INTRODUCTION:

Neurodegenerative diseases such as Alzheimer’s Disease (AD), impact not only the patient but the entire family. While a considerable body of knowledge exists on the consequences of AD and other dementias on caregivers and families, less is known about Latino caregivers in the case of early-onset dementia¹ (EOAD), especially genetically inherited forms.

At least 286 different mutations in three genes have been identified to cause a rare form of autosomal dominantly inherited, fully penetrant EOAD.² In such families, children and siblings of persons with EOAD are at 50% chance of inheriting the mutation and, if they do, are essentially certain to develop the illness.³ Large numbers of families with specific PSEN1 mutations, representing founder effects, have been described in Colombia (E280A, mean age of onset, 45)⁴ and Puerto Rico (G260A, mean age of onset, 55).⁵ More than 85 families have been identified in Mexico and the U.S. (personal observations) with the common A431E PSEN1 mutation apparently originating in Jalisco State, Mexico.^6,7 The mean age of symptom onset is 40 years^2,6 which is younger and less variable than with other mutations. Despite the existence of these founder mutations in Latinos, little has been written about the experience of caregivers in such families.

The context of EOAD is distinct from the more common late-onset form of AD because of the likelihood that the person is actively engaged in the workforce, raising young children, and, if married, with a spouse who is employed. Cognitive impairment leads to a diminished ability to perform daily tasks and increasing dependence on spouse, children, or other family members. A well-developed body of research demonstrates that caregiving can have adverse effects on the psychological and physical health of informal caregivers of persons with dementia.^1,8 The impact of EOAD on caregivers and children may be greater due to the younger ages of the affected family member as well as the caregivers.^8–15 For example, numerous studies have found that caregivers of EOAD patients experienced high levels of burden, anxiety, stress and depression, relationship problems, family conflict, employment and financial difficulties.^9–12 Younger caregivers may be less likely to be prepared for this role, perhaps due to reduced understanding or acceptance of the disease.^11,16 Caregiving by an at-risk family member is complicated by the knowledge that they too, might develop this illness as has been studied in Huntington’s disease.¹⁷ Furthermore, dementia of young onset may have more neuropsychiatric symptoms, such as alterations in socio-emotional behavior and insight, due to the higher prevalence of frontotemporal dementia in this age group.^10,12 EO dementia is more difficult to recognize and diagnosis generally takes substantially longer than late onset dementia, which can delay appropriate care.^10,12

Our study’s objective is to explore the lived experiences and needs of caregivers of Latino family members with EOAD.

2. METHODS:

Five focus group discussions (FGDs) were held in Los Angeles, California between October 2019-February 2020. They were conducted predominantly in Spanish by a bilingual PhD in public health, with 9 years’ experience conducting research with this population. Two Latino social workers assisted with notetaking and facilitating the surveys. Eligible participants were informal caregivers of Latino family members with EOAD. Eligible participants were invited through letters and follow-up telephone calls. Four FGDs were conducted with family members with the A431E PSEN1 substitution (the “Jalisco mutation”) while one FGD included caregivers of family members with EOAD without a known pathogenic mutation. A total of 13 families were represented, as some FGDs included participants belonging to the same nuclear and extended families.

Participants first completed a demographic survey and three standardized questionnaires (the Cultural Beliefs about Alzheimer’s Scale (CBAD), Alzheimer’s Disease Knowledge Scale (ADKS), and the Zarit Caregiver Burden Scale). If a Spanish language version was not previously available, the research team translated the questionnaire and all questionnaires were made available in English or Spanish. As seen in Table 1, a question guide with four domains, developed by the research team based on the literature and their own previous research, guided the FGDs. The FGDs lasted approximately 90 minutes each and were audiotaped, translated, and transcribed simultaneously. Participants received a $50 gift card to compensate them for their time.

Table 1:

Questionnaire Guide by Domain

Domain Name	Examples of Questions
Basic information	Can you tell me what you know about AD? Based on your experience, how would you describe what it’s like to have AD? How is the AD of your family member different than other forms of AD? Have you ever heard of genetic testing for AD?
Caregiver Role	What are your biggest concerns as a caregiver of someone with AD? (probes- for self, for family member, for other members of the family) What could make your role as a caregiver better/easier?
Support Systems	What are your main sources of support for being a caregiver?
Recommendations	What advice would you give to people who have just learned that their spouse/family member has AD? What do think people in the community should know about AD that they may not might already know?

This paper presents the FDG results. Data were analyzed using thematic analysis.¹⁸ An initial coding structure was developed and refined through an iterative process of data analysis and data collection. The research team reached consensus on the final themes. All participants gave written informed consent. The Rancho Research Institute (RRI) Institutional Review Board approved this study. Here we use verbatim quotes to illustrate prominent themes and pseudonyms to protect anonymity.

3. RESULTS:

Demographics

As seen in Table 2, 74.1% of the participants were female and 55.6% were monolingual Spanish speakers. Ages ranged from 18–75 with a mean of 44.5 years (age was unknown in three participants). One-third had completed primary school or less, one-third high school or less, and one-third had more than 12 years of schooling. About 41% were caregivers of spouses, 30% of parents, and 29% of other family members.

Table 2:

Demographic Characteristics of Sample

Characteristic	% (n) or Mean (range)
Gender
Male	25.9% (7)
Female	74.1% (20)
Age*
years	44.5 (18–76)
Preferred Language
English	44.4% (12)
Monolingual Spanish	55.6% (15)
Education (years)
0–6	33.3% (9)
7–12	33.3% (9)
More than 12	33.3% (9)
Relationship to Patient
Parent	29.6% (8)
Spouse	40.7% (11)
Child	3.7% (1)
Sibling	18.5% (5)
Other	7.4% (2)
Health Conditions*
Diabetes	14.8% (4)
Hypertension	22.2% (6)
Cholesterol	14.8% (4)
Cancer	11.1% (3)
Depression	18.5% (5)
Stress	22.2% (6)
Other	14.8% (4)
Support**
Religion	37% (10)
Family/Friends	77.8% (21)
Family w/ AD Patient	29.6% (8)
Doctors	33.3% (9)
Other	11.1% (3)

^*missing for 3 participants

^**could name more than one

3.1. Basic Knowledge and Family History

When asked to explain EOAD symptoms, participants most commonly described forgetfulness, getting lost, repeating tasks, forgetting how to perform basic personal tasks (i.e. personal hygiene, eating, or using the bathroom), failure to recognize familiar places or people, blank facial expression, and the inability to hold a conversation. At least half of participants also cited difficulty making decisions, loss of embarrassment (i.e. being naked in public), childlike behavior, and frustration.

At least two-thirds of the participants could name several family members from previous generations that likely had EOAD, including grandparents, aunts, uncles, and cousins. Among at-risk participants, only slightly more than half were aware of their own risk. One participant had taken care of her husband with EOAD and then her daughter who manifested the disease soon after. She spoke about the pain of not only losing both of them, but about having to wait and wonder if any of her other five younger children would develop the disease.

Most participants said they had ignored the early symptoms of EOAD, instead, attributing them to lack of sleep or stress. Virginia explained,

We put ourselves in denial. We put ourselves in a box that no, it is not going to happen to us. The family has it, but it is not going to happen to us.

3.2. Caregiver Role and Impact

EOAD had impacted many participants for their entire lives. Some remembered from childhood that there was always at least one affected person in the family. One participant said she couldn’t remember a time in her life when someone in her family did not have EOAD. Most had taken care of at least two generations of affected people-first parents, then siblings, or first spouses and now children. Three participants were providing full-time care to more than one family member.

While most felt an enormous burden, four female participants saw caregiving as a blessing and a privilege. Andrea said,

I am blessed by God that I have a mother that I can care for. She can’t hug me. She can’t talk to me. But when she looks at me, she tells me everything.

The vast majority felt a responsibility to care for their loved ones at home, especially those caring for spouses. Some had tried an institutional care facility but were dissatisfied with the quality of care. Home care was seen as a familial duty, whether it was a parent, sibling, or spouse. Most readily admitted they were unequipped to become full-time, long-term caregivers and their lack of confidence in their ability to adequately meet the physical needs of their affected family members produced anxiety and fear. The inability to leave the affected family member alone was another source of distress, preventing caregivers from working, socializing, or participating in other activities that they used to enjoy. The long hours of caregiving took a mental and physical toll, Victor said,

Day and night is the same. Hard. Really, really hard. All of us that go through this, we know about this and realize how difficult it is. We become isolated from people, our families, parties, friends. This is all that there is-taking care of them.

Without exception, all participants reported negative health outcomes, and many had several co-morbidities, including serious physical health challenges (i.e. cancer and diabetes). Anxiety, depression, sleeplessness, feelings of isolation, hopelessness, and excessive worrying were common. In addition to being tiring and stressful, watching the rapid decline of a loved one, especially at such a young age, was extremely difficult. Even worse, the long-term trajectory and hereditary nature of the disease meant that likely assuming the caregiving role for many years. Victor described this: My backpack is so heavy. I feel like I have a hunchback. But what can I do? No, there is no one else.

The biggest challenge of EOAD for caregivers was the young age at onset--in our sample between late 20s and early-40s. The early age at onset created unique economic hardships because families often relied on the wages of the affected person, who should have been in their most economically productive years. Too impaired to work, most were not old enough to qualify for government assistance, retirement pension, or social security. Some were also ineligible because they lacked legal residency or citizenship status. The young age at onset also meant that most had school-aged children; they became the primary caregivers for their affected spouse and children, while also financially supporting the family. Another factor was the grief that participants with affected spouses had at the loss of their spouse so young. Cristina discussed the loss of a partner that she already felt:

I have him next to me. But I am getting accustomed to his absence. I know who he is even though he doesn’t know who I am. I am going to continue to be with him until the end….you resign yourself to this. But it is difficult to know when someone’s life is ending little by little and not being able to do something.

Many participants were aware that the disease was inherited and reported constant worries about themselves or their children developing EOAD. The fact that so many participants had personally witnessed numerous family members die of EOAD heightened these worries because they understood the devastation. One example was Cristina, who made herself recall details about recent TV commercials to test her mental capacities,

Since I was a child, I lived with fear that I was going to get the sickness that dad had. Always. I hoped that I never forget anything because that might mean I have the disease. This is how we all were. Or, if I stuttered, I would tell my mom, “have you noticed anything in me?” This is how we have lived.

Diana also explained her guilt and worries about the genetic nature of EOAD,

I was already bearing the guilt. What kind of future am I going to give my kids? What kind of future am I going to have? Because I already know. I grew up seeing this…half my family got it and the other half were caregivers.

Reluctance to undergo genetic testing was common. More than three-quarters of the participants had no desire to learn their genetic status. Because the likelihood of developing the disease was out of their control, they tried to put it out of their mind. Only three of the participants knew their status, with one testing positive. Those who intended to get tested or who already had were largely motivated by preparing for the future. For example, Marta explained,

When I heard you could find out, that you could be tested, I jumped at the chance….I was already thinking of dying with dignity and in what states is that available. I didn’t want to put that burden on my families. I don’t want my family to see me dwindle away the way that I saw my other family members go. I don’t want to go through what they went through. And I don’t want my family to see me go like that. Because that is so painful.

3.3. Community and Family Support Systems

The majority of participants had not experienced stigma or discrimination but instead had received support from friends and neighbors. In general, most acquaintances were sympathetic but interaction with strangers was often very uncomfortable. The early age at onset made it challenging for people in the community to believe, which discouraged caregivers from leaving home with affected family members.

Those with supportive families recognized the sacrifices that their families had made. Many had help from siblings, children, and extended family, including some whose adult children had moved back home to help. However, about one-third of participants felt abandoned by their family.

Only one participant had sought care from a mental health counselor, and three had called local or national Alzheimer’s organizations for information. Despite rarely attending formal religious services, the majority reported their belief in God was a source of strength and support. Two participants specifically mentioned a saying “God doesn’t give you more than you can handle.” Andrea was 14 years old when her mother died of EOAD and, since then, six of her siblings had also developed EOAD. She described how her belief in God comforted her:

God opens his hands to you in many ways. It’s a pity to have a family member who is sick. But also remember that he is always with you. He is never going to leave you. He will walk with you.

While some had reached out to physicians, including neurologists, participants reported that they were skeptical or unhelpful. Almost everyone reported negative experiences with primary health care providers, because they were uninformed about EOAD or were insensitive or unsympathetic. Julia went to her primary care provider asking for the genetic test. She was told that she was “too young to worry about this.” When she went on to explain the type of AD that ran in her family and her fears about developing it, he casually asked her how often she worried about it. She replied, “every day and every minute of every hour of every day.” She was given anti-depressants but eventually got tested by another provider. Now, she goes into all doctor’s visits armed with written information about this form of AD to help educate them.

3.5. Recommendations

When asked what could make the lives of caregivers easier, two common suggestions emerged. First, overwhelmingly participants said the most important need was information. Most caregivers were initially unaware of what the diagnosis meant for their family and themselves. Those who had cared for other family members with EOAD understood what was to be anticipated as the disease progressed, but the majority reported they had no idea what to expect. Julia said,

Information is what is missing. You are ignorant at the beginning. You just say “Oh Alzheimer’s? They lose their memory.” But you don’t know what the process is, how to treat them, how to take care of them.

The two most common recommended topics for information were 1) basic skills in caring for someone with EOAD, such as how to bathe and feed the patient, and 2) self-care, especially stress management and personal mental health care strategies. Together, these could better equip caregivers to cope with the daily demands of caregiving and promote their own health and well-being. Promoting self-efficacy and raising confidence levels in their ability to provide care could reduce anxiety and feelings of helplessness. TV was suggested as a good communication method for information because of its ubiquity, along with the internet.

Several participants also talked about the need for more public awareness about EOAD. Andrea said,

There is so little information. I don’t know if it is because of lack of interest by the public or because they want to hide it or people are embarrassed or because there isn’t a big social movement. But there should be more awareness and communication about this so that people know how to treat them. Because they don’t stop being human beings.

The second most common recommendation was additional avenues of support and resources, including people to help alleviate the burden. Support groups were mentioned often, by in person or via phone. Several participants had attended support groups, including Virginia:

It is difficult to accept it when a doctor tells you or you have test results that say yes, you have it. So we worry about it. I need help for myself too. In a support group, we find out that we aren’t the only people that are going through this, that we have the same difficulties as others. Because I didn’t know there were others….

Juan also discussed the importance of solidarity in the caregiving experience,

You feel like you’re the only one, or the worst case. But unfortunately there are always worse cases. So when you figure this out, you start getting more information, …. Talking with others in the same situation, you become calmer.

Participants also requested help with applications for government resources and legal issues, such as how to apply for social security, and how to make an appeal when a disability claim was denied. One family talked about how when one of the sisters had died of EOAD in her 40s;they had required legal assistance to formally adopt her five-year old son.

4. DISCUSSION

Our results provide information about the needs of Latino caregivers of family members with EOAD. Our results are congruent with several other studies documenting a lack of knowledge about the early signs of AD among Latinos in the US^19,20 and that this is a barrier to seeking care.^19,21 Racial/ethnic minority groups are more likely than whites to normalize forgetfulness and conceptualize dementia as a normal part of aging instead of an illness.^19,22–26 While no treatment or cure is available, timely detection of EOAD allows patients and caregivers time to make decisions.

Caregiving was exhausting, lonely and emotional, and was worse for those who had assumed this role since childhood and/or who had provided care for more than one generation of family members. Many participants reported physical and mental co-morbidities, which supports numerous studies on the negative health impacts of caregivers, such as depression, anxiety, and stress.^{9,10,13,14,27} The difficulty of caregiving was compounded by other pressures related to the relatively young age of the caregivers, such as caring for young children, providing financially for the family, and losing their active role in society, which has also been found in other studies among caregivers of early-onset dementia patients.^9–12 Those at risk or who had children at risk contemplated inheriting the disease and worried what the future would hold. Having personally witnessed other family members die of EOAD meant that they were fully aware of its impact on families. Grief, social isolation, loneliness, and lack of time for themselves amplified participants’ stress and mental health, especially among spouses who were relatively young, which concurs with the literature.¹⁰ In contrast to other studies, guilt or anger from feeling “robbed of the future” was not mentioned in our study.¹⁰

A few participants discussed positive aspects of caregiving, such as fulfilling a familial duty of caring for loved ones at home, which might be especially meaningful in Latino culture because of familismo.^22,28–32 A study comparing the influence of familismo on caregiver burden between Hispanic caregivers in Madrid and Los Angeles found a negative correlation in the U.S. that was absent in Spain, suggesting that family values reduce caregiver burden.³¹ Promoting these positive concepts, along with sources of strength and self-efficacy, could foster resiliency and coping, and reduce feelings of helplessness, which has been emphasized in other studies as ways to increase caregiver psychological well-being.⁵

Our findings are similar to Ducharme et al.’s (2014) study which found that almost 70% of EOAD family caregivers in Canada report unmet psycho-educational needs including more information and financial resources, activities to improve the quality of life of the affected family member, and time away from caregiving responsibilities.¹ Our results, coupled with results from other studies, underscore the need to tailor programs for caregivers based on the age of onset of the disease, as caregivers of family members with EOAD will have distinct needs and experiences from those who are caregivers for late-onset AD.^1,10,14 Resources for monolingual Spanish speakers were also scarce, providing additional evidence for the importance of culturally-specific resources.^33,34 The provision of accurate information and resources is crucial to equipping caregivers with the necessary tools to provide appropriate care, and to lessen their anxiety and fears around this role. Better access to dual-language information and support could improve affected persons’ and caregivers’ quality of life as they deal with long-term caregiving responsibilities.^34,37

We also found that most lacked adequate information about EOAD including the risk of developing it. While the desire for genetic testing may be low among this population, genetic counseling and testing availability are crucial for at-risk families to ensure awareness of their risks and options,^22,35 especially as new developments in research around treatment or cures emerge. Physicians could also benefit from educational campaigns. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD constrained effective patient-provider communication, which has been supported in other studies.^{34, 37} Educational campaigns could help to dispel myths and misconceptions, reduce stigma, and encourage more people to seek timely diagnosis and care.

5. CONCLUSION

Caregivers of family members with inherited forms of EOAD experience a range of unique and complex challenges related to the young age at onset and fast progression of the disease, including financial difficulties, dual burdens of caregiving of the affected family member and young children, and the physical and emotional consequences of the burden of this role, including stress, exhaustion, and grief. At the same time, many are confronted with the risk of themselves and/or their children developing EOAD. Understanding and meeting the distinct needs of Latino caregivers of family members with EOAD in the US is crucial to fostering resiliency and promoting physical and mental health. Our results highlight the critical need for information and resources that are both tailored to the early onset of the disease, its genetic nature, as well as the cultural and linguistic preferences of this population. Finally, additional support services could help equip caregivers with skills and confidence to foster resiliency and adaptation to the caregiving role in the healthiest ways possible.

Key Points.

• Our results highlight the distinct needs of informal caregivers of Hispanic individuals with early-onset Alzheimer’s, including financial difficulties, dual burdens of caregiving of the affected family member and young children, worries about inherited the disease, and physical and emotional consequences of the caregiving role.

• Improved access to dual-language information and support services are needed and should be tailored specifically for inherited forms of early-onset Alzheimer’s.

• Additional information and support services could help equip caregivers with the skills and confidence to foster resiliency and adaptation to the caregiving role.

Why does this paper matter.

Caregivers of family members with early-onset, inherited Alzheimer’s experience a range of unique and complex challenges. Our results highlight the need for information and resources tailored to its early onset, genetic nature, as well as cultural and linguistic preferences of this population.