Against nature: The experiences of parents caring for an adult child with young-onset dementia

Study design

The aim of this study was to examine the experiences of parents caring for an adult child with YOD. A qualitative design using semi-structured interviews was chosen, as this approach is well suited to capturing the depth, nuance, and subjectivity of complex caregiving experiences that cannot be meaningfully conveyed through quantitative measures. Thematic analysis was used to identify patterns within participants’ narratives while allowing flexibility to account for diverse individual perspectives. ³² This method facilitated the exploration of both shared challenges and unique variations in parents’ accounts, providing a rich, contextually grounded understanding of caregiving in the context of YOD.

Sample

Participants were recruited through purposive sampling. Advertisements were posted on internet forums and Facebook groups with group administrator approval. These forums included the following: “Families Dealing with FTD,” “Alzheimer Dementia—Daily Activities,” and “Amda Group—An Association for Alzheimer's Dementia Patients and Similar Diseases in Israel.” Members of these group were family and friends of individuals diagnosed with YOD. Candidates were provided with full information regarding the study when they made contact via email or phone, as soon as their compatibility with the inclusion criteria was ascertained. The inclusion criteria were as follows: (a) Have a child diagnosed with dementia before age of 65; (b) providing informal care for at least one year since the diagnosis; and (c) Jewish Israeli and Hebrew-speaking. Informal caregivers were defined as non-professional individuals who provided the majority of assistance and supervision necessary to meet the basic needs of persons with any form of dementia. ⁸ In all cases, the caregiver-care recipient relationship was biological.

A total of twelve participants met all inclusion criteria and were interviewed: six men and six women, ranging in age from 71 to 82 (see Table 1, for participant characteristics). The study's sample size is consistent with other studies employing thematic analysis to achieve data saturation. ³³ No eligible participant declined participation, and none withdrew during the study. Most participants were married and cohabiting with their spouses. None of the parents lived with their adult child diagnosed with YOD. Among the adult children with YOD, three were divorce and nine were married, though none were living with their spouses at the time of data collection. All adult children received some form of formal caregiving support, in addition to care provided by their parents, who served as the primary informal caregivers in all cases. The types of dementia represented in the sample included FTD and DLB.

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Table 1.

Participant characteristics.

Name a	Age	Gender	Marital status	Caregiving duration	Child diagnosis	Age at diagnosis	Child marital status
Shalom	74	Male	Married	6 years	FTD	41	Divorce
Rachel	71	Female	Married	6 years	FTD	41	Divorce
Moshe	75	Male	Married	2 years	FTD	46	Married
Hava	73	Female	Married	2 years	FTD	46	Married
Gilad	81	Male	Married	7 years	FTD	53	Married
Avi	79	Male	Married	4 years	DLB	45	Married
Haim	82	Male	Married	5 years	FTD	48	Married
Shira	78	Female	Married	5 years	FTD	48	Married
Shay	80	Male	Married	5 years	DLB	50	Married
Hana	78	Female	Married	4 years	FTD	42	Married
Tova	75	Female	Married	3 years	FTD	39	Married
Yarden	79	Female	widowed	6 years	DLB	49	Divorce

^a

Pseudonyms were assigned to participants to maintain their anonymity.

Data collection

Data were collected through in-depth, semi-structured interviews conducted between July and November 2024. The interview protocol provided systematic and consistent data collection while maintaining flexibility to elicit spontaneous, detailed accounts and preserve a conversational tone. Questions focused on experiences across the trajectory of YOD, perceived challenges and sources of distress, and supports that had, or could have, been helpful (see Table 2, for interview guide). The interview guide was developed based on multiple sources, with key concepts and domains of exploration identified through a review of the published literature,^34–36 which informed the structure and thematic focus of the guide.

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Table 2.

The interview guide.

Questions

Please tell from your experience what is the meaning of being a parent to a child with YOD (opening Q) Tell me about the diagnosis? How you found out, what you felt? Tell me if any changed in your life since your child's diagnosis? Could you describe a typical day in caring for your child with YOD? What challenges arise as a caregiver and how do you address them? How has the disease affected your Relationship with your child, your feeling toward him? Have you noticed any changes in the family dynamics since your child's diagnosis? Do you receive any support? What are your biggest concerns or fears for the future as your child's disease progresses?

All interviews were conducted face to face by the first author, a female graduate student in medical psychology with prior experience in qualitative interviewing and analysis. At the beginning of each interview, participants were informed of the study's objectives and invited to ask questions. Written informed consent was obtained prior to participation, followed by the completion of a brief demographic questionnaire. Interviews were conducted in Hebrew, lasted between 45 and 60 min (average 50 min), and took place in participants’ homes across the Lowland region, Jerusalem District, and Central District of Israel. With participants’ consent, all interviews were audio-recorded in their entirety and subsequently transcribed verbatim in Hebrew by the first author. To ensure confidentiality, all identifying information was removed from the transcripts, and all study materials were stored securely under password protection.

Each interview began with a broad, open-ended question intended to elicit personal narratives: “Please tell from your experience what is the meaning of being a parent to a child with YOD.” This was followed by a series of follow-up, exploratory, and open-ended questions, including: “Tell me about the diagnosis? How you found out, what you felt?”; “What challenges arise as a caregiver and how do you address them?”; and “Have you noticed any changes in the family dynamics since your child's diagnosis?”

Data analysis

The interviews were transcribed verbatim in Hebrew by the first author, who also conducted the interviews. Data analysis was carried out on the original transcripts, and only the selected quotations were translated into English after the analytic process was completed. A reflexive thematic approach guided the analysis, following Braun and Clarke's six-phase process of data familiarization, coding, theme development, and refinement.^37,38 This method provided a systematic yet flexible framework for identifying and interpreting patterns within qualitative data, enabling the construction of meanings and conceptualizations grounded in participants’ lived experiences and subjective realities.^37,39

Both authors, each with experience in qualitative research, participated in the analytic process. Each transcript was read and re-read multiple times to ensure deep familiarization, during which preliminary ideas and impressions were recorded. Initial codes and categories were generated from each individual transcript. Transcripts were systematically coded, and codes were then grouped together into elevated categories, based on either being too similar or by virtue of conceptually belonging to the same area. Codes were sorted into themes and overarching themes. This involved grouping some of the categories and generating new themes to better define and accommodate the scope of the categories. The themes were reviewed and discussed by all authors to determine whether any should be combined, refined, or discarded. To enhance the trustworthiness of the analysis, ⁴⁰ the coding process and thematic refinements were jointly reviewed by the two authors. Disagreements were resolved through discussion and by explicitly considering potential researcher bias. The most vivid, compelling, and descriptive extracts were selected from each transcript upon unanimous agreement among the researchers regarding each theme. Ambiguities or discrepancies in interpretation were addressed collaboratively until consensus was reached. Data saturation was considered achieved when no new themes or insights emerged from subsequent interviews. ⁴¹

Researcher reflexivity

The first author is a medical psychology graduate student, and an adult child of a parent diagnosed with YOD. To minimize potential bias, she employed a transparent approach by openly acknowledging her dual role to the research supervisor, the second author. Additionally, the authors discussed the thematic analyses with each other throughout the study. Any disagreements on themes and excerpts were resolved through discussion and exploration of alternative explanations for both data and conclusions.

The diagnosis

This theme examines the lengthy and complex diagnostic journey experienced by parents caring for an adult child with YOD, from the initial recognition of symptoms to the formal diagnosis.

Parent-child relationship

This theme examines the evolving parent-child dynamics in the context of YOD, emphasizing the emotional and practical challenges of prolonged caregiving. Parents’ reflections on loss reveal a narrative marked by emotional complexity, changes in communication and connection, and the profound impact of dementia on multiple aspects of their relationship.

Change in relationship. Parents described their pre-diagnosis relationship with warmth and admiration. “He was my right hand… Now I have to face my struggles alone, while also taking care of him” (Shalom). The disease reshaped these bonds, often arousing negative emotions. “Now, when I see him yelling violently at his children, I feel disgusted and afraid” (Shira). Despite these changes, several parents described efforts to maintain a sense of normalcy and continuity in their relationship. “We used to sit for hours and talk… and that's still what I do with him today” (Shay). Others used symbolic activities to maintain their emotional connection: “Sometimes we read him stories he used to love, even though it's not always clear if he understands” (Avi).

Assimilation into the caregiver role

This theme examined how parents assimilated into the caregiver role following a YOD diagnosis, highlighting significant shifts in their personal identities as well as the profound emotional and practical challenges associated with caregiving.

Eternal parenthood

The extraordinary circumstances surrounding YOD caregiving evoked profound emotional strain among parents. As their child's condition worsened, parents faced overwhelming feelings of confusion, grief, and frustration, often intensified by a pervasive sense of powerlessness in the face of their child's suffering. These findings are consistent with existing literature, which indicates that the prolonged trajectory of dementia, progressive cognitive decline, and heightened emotional distress significantly contribute to caregiver burden. ⁴² While such emotional responses are common among dementia caregivers, recent studies highlight the value of cognitive coping strategies, such as reframing negative thoughts and focusing on small positive moments-in reducing psychological distress. ⁴³

The emotional burden experienced by parents was further compounded by the ways in which caregiving for an adult child with YOD challenged traditional conceptions of parenting. Traditionally, parenthood is framed within the context of raising young children, with the expectation that as children grow older, they mature, assume responsibility, and become independent.^44,45 In parallel, parents age and eventually retire from active caregiving roles. However, for parents in this study, this normative trajectory was fundamentally disrupted. Rather than witnessing the sustained independence typically associated with midlife, parents observed a regression in their child's autonomy as a consequence of the disease. Their adult child became progressively more dependent on them, emotionally, cognitively, and physically.

This reversal aligns with the concept of the “eternal parents”, ⁴⁶ wherein the parental role extends indefinitely and often intensifies over time. This shift profoundly impacted daily life, as parents found themselves engaging in routines reminiscent of early parenthood, providing constant supervision, emotional support, and hands-on care. Unlike early parenthood, which is typically marked by growth and a gradual reduction in care requirements, this experience was characterized by ongoing deterioration and escalating demands, resulting in a persistent and challenging caregiving reality.

Within this reality, some parents construed caregiving as an inherent extension of their parental responsibilities, framing devotion to family as a central component of their identity. For these individuals, the fulfillment of such obligations often engendered a sense of pride, continuity, and belonging, allowing them to reinterpret the caregiving role as meaningful despite its inherent challenges. Simultaneously, however, they recognized the profound personal costs associated with caregiving, including reduced social engagement, financial strain, and the deterioration of their own physical and emotional well-being. For others, adherence to ideals of parental self-sacrifice intensified a sense of ambivalence, as these ideals not only sustained commitment but also amplified guilt and perceived inadequacy when patience, compassion, or physical endurance faltered under the cumulative pressures of caregiving.

This sense of ambivalence must be understood within the broader sociocultural context of Jewish Israeli society, which integrates elements of modern Western individualism with enduring traditional, religious, and cultural commitments to family life. Within this cultural framework, parenthood is not only associated with the responsibility of providing care but is also closely linked to personal achievement, marital fulfillment, and the preservation of lineage.^47–49 Although Jewish Israelis place significant value on independence and individual self-realization, paralleling patterns characteristic of American middle-class culture, ⁵⁰ these ideals coexist with deeply embedded collectivist norms that elevate loyalty, devotion, and self-sacrifice within the family unit. Consequently, the parents in this study were required to negotiate their caregiving within a field of competing cultural imperatives. On the one hand, as older adults they aspired to autonomy and to the cultivation of a normative life stage associated with later life, which is conventionally perceived as free from the obligations of active parenting. On the other hand, they remained bound by a profound moral commitment to provide continuous and selfless care for their children.

Caregiving dissonance

The caregiving role often created profound tension for parents, as their unconditional love and commitment to their child coexisted with feelings of sorrow, frustration, and at times, even disgust, particularly as they witnessed the disorienting erosion of their child's identity. This emotional conflict exemplifies the concept of ambivalence, the simultaneous experience of opposing feelings, as highlighted in caregiving literature. ⁵¹ Ambivalence was further intensified by the perception that caregiving was an imposed obligation rather than a choice. One parent described feeling “chained” to these duties, a metaphor that captures the confining and inescapable nature of their daily reality.

As the disease progressed, parents experienced the unique pain of mourning someone who remained physically present but was no longer emotionally or cognitively accessible. This experience, known as ambiguous loss, leaves caregivers suspended in a state of unresolved grief. ¹⁴ This ambiguous loss erodes shared memories and weakens emotional bonds, ⁵² making it difficult for parents to reconcile their child's current state with memories of who they once were. In response, parents adopted coping strategies aimed at preserving continuity and connection. Some maintained shared routines or revisited meaningful activities from the past, while others focused on emphasizing their child's pre-illness traits and values to sustain a sense of emotional closeness. These findings align with research suggesting that maintaining a positive narrative about the person with dementia can support caregivers and help reduce emotional strain. ⁵³

Through the development and application of coping strategies, many parents cultivated a distinct caregiver identity characterized by resilience, competence, and emotional fulfillment. For these individuals, caring for an adult child with YOD was not perceived merely as a set of burdensome obligations, but rather as a meaningful role that provided purpose and reaffirmed their capacity to express love, protection, and commitment. Within their narratives, caregiving was frequently represented as an opportunity to embody deeply held values of devotion, responsibility, and moral duty, resonating with cultural ideals such as filial piety. This reframing underscores how the caregiving relationship, despite its considerable demands, could simultaneously nurture a strengthened sense of self and affirm the moral worth of caregivers’ actions. Similar positive dimensions of caregiving within family contexts have been identified in several studies conducted in Western societies. ⁵⁴ Although such perspectives remain relatively underrepresented, they offer valuable insight into the multidimensional character of parental caregiving in YOD, drawing attention to its capacity to encompass affirming as well as challenging experiences. Acknowledging these voices is crucial, as their scarcity may reflect not only the lived complexities of caregiving but also the impact of social and cultural norms that discourage open expression of its positive dimensions.^55,56

Nevertheless, this positive adaptation was not shared by all parents. For some mothers, the unremitting demands of caregiving for an adult child with YOD generated a profound rupture in their maternal identity. In these cases, traditional ideals of motherhood, emphasizing patience, compassion, and emotional availability, were continually strained by the psychological and physical burden of attending to a child whose personality had become unfamiliar and unrecognizable. Within this context, the caregiving role frequently elicited intense negative emotions, including anger, frustration, and even aversion. When directed toward their child, these affective responses often provoked feelings of guilt, shame, and self-doubt, leading mothers to critically question their moral adequacy as caregivers. These findings resonate with existing research suggesting that individuals prone to shame are more likely to engage in harsh self-criticism and to internalize a sense of personal defectiveness, thereby impeding the development of self-compassion and self-acceptance. ⁵⁷ Over time, such cycles of self-directed negativity may intensify psychological distress. ⁵⁸

These struggles highlight the precariousness of maternal identity when deeply ingrained cultural expectations collide with the lived realities of dementia caregiving. Importantly, the findings must be situated within the broader sociocultural discourse of “good mothering,” which remains particularly salient in Israeli society while also reflecting dominant ideals across many Western contexts. ⁵⁹ Within this cultural framework, maternal identity is frequently equated with self-sacrifice, unconditional giving, and the prioritization of children's needs above personal well-being. Consequently, the mothers in this study were burdened not only by the emotional and practical challenges of caregiving but also by the internalized imperative to embody the ideal of the ever-giving mother, even when such enactment entailed profound personal costs. This enduring tension can be understood through the lens of identity non-verification, wherein distress arises when role-related behaviors are perceived as inconsistent with one's internalized self-concept, thereby generating emotional instability, identity strain, and, in some cases, transformations in self-definition. ⁶⁰

Dementia grief model

The experiences of parents can be conceptualized as comprising two interrelated processes: the loss of the child they once knew and the subsequent transformation of their parental identity. These processes are well captured by the DGM. ²² The “separation” state began when parents first recognized changes in their child's personality and cognitive functioning. This recognition marked a pivotal turning point, initiating a gradual and painful process of losing the child they once knew. For some parents, receiving a formal diagnosis provided clarity and validation, enabling them to begin confronting and acknowledging the depth of their loss. Others, however, responded with denial and resistance, defensive reactions that risked stalling their progress in this state and hindering their ability to fully acknowledge the loss.

The “liminality” state emerged as the disease progressed and caregiving demands intensified. During this phase, parents grappled with the stark contrast between their child's pre-illness identity and their current condition, a reflection that extended to the shifting dynamics of the parent-child relationship. Parents endured profound uncertainty and ambiguity, caught between their former parental role and the evolving demands of caregiving. This ambiguity often gave rise to emotional ambivalence, as parents oscillated between unconditional love for their child and the difficult emotions elicited by caregiving and the symptoms of the disease. Nevertheless, by acknowledging and articulating these complex emotions, some parents demonstrated a willingness to confront their loss, which enabled the grieving process to unfold.

Finally, the “re-emergence” state marked a period of adaptation and acceptance for some parents. Several parents began to recognize their own limitations, particularly those related to aging, and sought external support to address their child's changing needs. Some demonstrated resilience by tolerating and processing the emotional challenges of caregiving, which facilitated the reconstruction of a renewed parental identity through psychological adaptation. However, others remained anchored in rigid self-concepts, which contributed to a fragmented sense of identity and unresolved questions about their new role as parents.

Applying the DGM to the parental experience of YOD highlights the need for interventions that address parents’ evolving psychological challenges throughout dementia-related grief. To effectively address these challenges, healthcare professionals should prioritize early diagnosis and provide clear information and practical guidance to reduce confusion and distress, enabling parents to better support their child and develop adaptive coping strategies. Mental health professionals should provide empathetic, individualized therapy that acknowledges caregivers’ unique needs and helps challenge unhelpful internalized beliefs. When caregivers struggle with maladaptive narratives rooted in guilt or self-blame, therapeutic interventions should focus on reshaping these narratives to foster a healthier self-concept. As Montgomery and Kosloski ⁶¹ suggest, cultivating present-focused awareness can enable caregivers process ongoing losses, reconstruct meaning, and adapt their identities. In addition, Given the rarity of this caregiver group, tailored support groups are especially valuable. These groups enhance knowledge, well-being, and caregiving skills, while fostering a sense of community and reducing isolation.^62,63 Group therapy, therefore, offers essential solidarity and practical support for parents navigating the unique complexities of caregiving.

This study offers a distinctive scholarly contribution by examining the experiences of parents providing care for an adult child with YOD in Israel, thereby addressing a caregiving population that has been largely neglected in existing research. While prior studies have predominantly concentrated on spouses, children, and siblings, the unique challenges encountered by parents of adult children with YOD have remained comparatively overlooked. By foregrounding this group, the study confronts a critical research gap and extends the conceptual boundaries of informal caregiving scholarship. The findings challenge the prevailing assumption that parental responsibilities diminish or cease once children reach adulthood, demonstrating instead that YOD disrupts normative life-course trajectories and reimposes intensive parenting obligations at a late stage in life. Interpreted through the theoretical lenses of ambiguous loss, dementia grief models, and identity strain, these findings illuminate the complex processes through which parental caregiving is reframed under conditions of chronic illness. In doing so, the study underscores the urgent need for policies and interventions that address the vulnerabilities of aging parents, who must navigate the dual burden of supporting the regression of an adult child with YOD while simultaneously coping with their own aging. This underexplored dynamic highlights the importance of developing culturally sensitive, intergenerational approaches to dementia care.

Building upon these contributions, the study also carries broader implications for theory, practice, and policy. The findings suggest that existing models of dementia-related grief require refinement to more fully capture variations across caregiver roles and life stages. From a practical perspective, the results emphasize the necessity of interventions specifically tailored to the circumstances of older parents, including psychoeducational programs, support groups, and therapeutic approaches that directly address the prolonged parental role, identity disruption, and the compounded strain of caregiving in later life. At the policy level, the study underscores the importance of formally recognizing non-normative caregiver populations within health and welfare systems, and of expanding support services, respite opportunities, and financial assistance for parents of dependent adult children. More broadly, the findings point to the need for culturally sensitive frameworks that acknowledge the pervasive influence of familial devotion and parental sacrifice in shaping caregiving experiences in Israel and comparable societies. Taken together, these insights call for a more inclusive conceptualization of dementia caregiving, offering critical direction for future research, clinical interventions, and policymaking.

The present study should be considered within the context of its limitations. First, the participant sample comprised solely parents of adult children diagnosed with YOD, specifically within the clinical subtypes of FTD and DLB. As a result, the study does not capture the broader spectrum of caregiving experiences associated with other forms of YOD or neurodegenerative conditions. The distinct cognitive and behavioral manifestations characteristic of FTD and DLB may have shaped parental caregiving experiences in ways that are not generalizable to caregivers of individuals with other dementia etiologies. Second, the interview guide did not include a direct question about positive caregiving experiences, which may have limited the opportunity for such themes to surface. The scarcity of positive narratives may also reflect social desirability bias or broader cultural taboos surrounding open discussion of dementia care. Future studies would therefore benefit from incorporating interview prompts that intentionally elicit both affirmative and challenging dimensions of the caregiving experience.

Additionally, the study did not examine potential gender-based differences in caregiving, which could have provided important insights into variations in burden, coping strategies, and relational dynamics. A further limitation pertains to the recruitment strategy, which relied heavily on internet forums. This method may have disproportionately excluded caregivers who are older, less technologically connected, or less active on digital platforms. Consequently, the sample may not adequately represent the full diversity of caregiving perspectives, thus narrowing the generalizability of the findings. Future research should therefore employ more diversified recruitment strategies, such as outreach through healthcare providers, community centers, and caregiver organizations, in order to broaden participation and enhance representativeness. Finally, further investigation is warranted to design, implement, and evaluate therapeutic interventions specifically tailored to the distinctive challenges of parental caregivers.

Conclusion

The present study highlights the multifaceted challenges faced by parents who provide care for an adult child diagnosed with YOD, underscoring the profound emotional, physical, and relational repercussions of this role. Findings indicate that these parents endure a prolonged and evolving sense of loss as the disease advances, often marked by the gradual dissolution, and, at times, renegotiation, of parental identity. By foregrounding the narratives of parents of adult children with YOD, the study brings visibility to a population largely neglected within the existing body of dementia caregiving scholarship. In documenting how older parents contend with the enduring continuation of parental responsibilities, disruptions to self-concept, and the burden of culturally embedded ideals of parenthood, the research addresses a critical empirical and theoretical gap. It further contributes to broader discussions on ambiguous loss, dementia-related grief, and identity strain. Crucially, the findings underscore the pressing need for tailored psychosocial interventions and culturally responsive support systems designed for this specific caregiving group. Future research should continue to prioritize their perspectives while also advancing public and institutional recognition of their distinct challenges, thereby informing therapeutic, social, and policy frameworks that more effectively meet their multidimensional needs.