A scoping review and comprehensive needs assessment for developing an intergenerational cognitive and physical activity program for MCI patients and their adult children

Abstract

Mild cognitive impairment (MCI) is a high‐risk state for dementia, marked by cognitive decline with preserved daily functioning. Combined physical and cognitive activity (PA+CA) programs show promising benefits for MCI patients. Involving adult children through intergenerational approaches may enhance participation and impact, yet little is known about tailoring such programs to both generations’ needs. This study aimed to (1) identify cognitive, physical, and psychosocial challenges experienced by MCI patients, and (2) explore the needs, preferences, barriers, and facilitators regarding participation in an intergenerational PA+CA program. A mixed‐methods design combined a scoping review of 45 studies with eight semi‐structured interviews involving eight MCI patient–adult child dyads. Results highlight challenges such as memory loss, fatigue, social withdrawal, and a desire for meaningful, safe, and structured activities. Barriers included overload, physical limitations, and time constraints; facilitators involved routine, emotional support, and family connection. Findings offer guidance for designing effective intergenerational PA+CA programs.

Highlights

• A scoping review and interviews identified key challenges in mild cognitive impairment (MCI) across domains.

• Physical, cognitive, and psychosocial needs were mapped for MCI patients and their children.

• Barriers to participation included cognitive overload, low motivation, and time constraints.

• Facilitators included emotional safety, routine, and meaningful family connection.

• Findings support the design of tailored, intergenerational combined physical and cognitive support programs for MCI.

1. INTRODUCTION

Healthy aging is one of the major challenges of the twenty‐first century. The global population aged > 65 is expected to double over the next three decades, ¹ associated with a major increase in chronic conditions, such as cardiovascular and neurodegenerative diseases, leading to a growing prevalence of dementia. ² Global dementia diagnoses are expected to reach ≈ 82 million by 2030, with further increases anticipated to 152 million by 2050. ³ , ⁴ To address this challenge, a key strategy involves preventing or delaying cognitive decline, particularly in high‐risk populations such as individuals with mild cognitive impairment (MCI). ⁵

MCI is a critical intermediate stage between normal aging and dementia, marked by measurable cognitive decline, ⁶ while independent functioning remains largely preserved. ⁷ Global prevalence of MCI in the geriatric population is ≈ 24%. ⁸ While ≈ 10% to 20% of MCI patients progress to dementia annually, some stabilize or even return to normal cognitive functioning. ⁹

Effective disease‐targeting therapies for neurodegenerative dementias remain limited, highlighting the need of early identification and intervention in at‐risk populations. Early preventive strategies, particularly those targeting modifiable risk factors, therefore play a crucial role in mitigating cognitive decline in MCI patients. ¹⁰ Among these strategies, regular physical activity (PA) has been identified as a significant behavioral factor, consistently showing positive effects on cognitive functioning in MCI patients. ¹¹ , ¹² Recognizing these benefits, the World Health Organization recommends regular PA for dementia prevention. ¹³ Interestingly, recent studies have shown that combined physical and cognitive activity (PA+CA) may yield greater benefits for cognitive health than PA alone, due to its synergistic impact on brain plasticity. ¹⁴ , ¹⁵ , ¹⁶ Specifically, PA+CA interventions, such as dual‐task walking, exergaming, or rhythmic movement combined with cognitive tasks, have demonstrated significant improvements in working memory, executive function, episodic memory, processing speed, and global cognition. Additionally, these interventions have been shown to enhance balance, mobility, cardiovascular fitness, and activities of daily living in MCI patients, as shown in a systematic review of 10 randomized controlled trials (RCTs) and a meta‐analysis of 9 RCTs. ¹⁴ , ¹⁷ , ¹⁸ Beyond cognitive improvements, PA+CA interventions also contributed to mood improvements, including reductions in depressive symptoms and improvements in health‐related quality of life (HRQoL). ¹² , ¹⁸

Moreover, intergenerational programs (IGPs), which bring together older and younger generations in one intervention program, have gained attention in the literature on healthy aging and dementia prevention for their potential to improve cognitive, physical, and general well‐being across age groups. ¹⁹ , ²⁰ , ²¹ Within the context of MCI, with their offspring often taking on a crucial caregiving role, IGPs can be particularly beneficial by using the familial bond to enhance engagement in PA, motivation, and mutual support. ²² , ²³ To our knowledge, no intergenerational PA+CA programs currently exist specifically designed for MCI patients and their (adult) children. This gap likely exists due to the complex challenge of addressing the diverse cognitive, physical, and psychosocial needs of MCI patients, alongside the needs and requirements of both MCI patients and their adult children related to such a program.

Developing an intergenerational PA+CA for MCI patients and their adult children requires a nuanced approach that considers the complexity of their diverse needs. Therefore, this study aims to conduct a comprehensive needs assessment to identify MCI patients’ challenges in the cognitive, physical, and psychosocial domain, as well as the needs, preferences, barriers, and facilitators of both MCI patients and their adult children related to an intergenerational PA+CA program. This will be done by conducting a scoping review complemented by in‐depth semi‐structured interviews with both MCI patients and their adult children. By integrating both the insights gained from the literature with detailed perspectives gathered through semi‐structured interviews, this study aims to provide a comprehensive understanding of the multifaceted challenges and needs of MCI patients and their adult children, providing a solid foundation for developing an intergenerational PA+CA program for this target group.

2. METHODS

2.1. Design

A qualitative descriptive research design was used, combining a scoping literature review with semi‐structured interviews involving MCI patient–child dyads. This mixed approach enabled both a broad overview of the existing evidence and in‐depth exploration of perspectives from individuals directly affected by MCI.

2.2. Data collection and procedure

This study consisted of two phases: a scoping literature review (phase I), followed by semi‐structured interviews with MCI patients and their adult children (phase II). In phase I, findings from the literature provided a foundational understanding of the cognitive, physical, and psychosocial challenges experienced by MCI patients, as well as the needs, barriers, and facilitators related to an intergenerational PA+CA program. These insights were further explored and elaborated upon in phase II through interviews with patient–child dyads.

2.2.1. Phase I: scoping literature review

The scoping literature review was conducted between September and December 2024, following the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis Extension for Scoping Reviews (PRISMA‐ScR) guidelines. ²⁴ The process consisted of five key steps: (1) identifying the research question; (2) identifying relevant studies; (3) selecting studies; (4) charting the data; and (5) summarizing, collating, and reporting the results.

The aim of this study was to comprehensively review the literature on the cognitive, physical, and psychosocial challenges experienced by MCI patients in daily life. Additionally, the review aimed to identify the needs, preferences, and potential barriers and facilitators related to an intergenerational PA+CA intervention from the perspective of both MCI patients and their adult children. To achieve these objectives, the study primarily focused on qualitative research designs, as reflected in Search block 6 (Table 1), which included terms describing qualitative and mixed‐method research with a qualitative component.

TABLE 1.

Overview of search blocks and key terms used in the scoping review strategy based on the SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, and Research type) framework.

	Key terms
Search block 1: population	Mild cognitive impairment‐related terms, including “mild cognitive impairment*”, “MCI”, “cognitive decline*”, “mental deterioration*”, “memory impairment*”, and other related terms.
Search block 2a: challenges	Terms related to challenges in cognitive, physical, and psychosocial domains, such as “challenge*”, “difficult*”, “problem*”, “burden”, “experience*”, “issue*” and other related terms.
Search block 2b: needs, preferences, barriers, and facilitators	Terms related to needs, requirements, barriers, and facilitators for interventions, such as “needs assessment*”, “requirement*”, “compliance”, “barrier*”, “facilitator*”, “engagement*”, “motivation”, “strength*”, “benefit*”, “attitude*”, and other related terms.
Search block 3: domains	Terms capturing cognitive, physical, and psychosocial functioning, including “cognitive function*”, “memory impairment”, “physical function*”, “mobility”, “quality of life”, “depression symptoms”, “social interaction”, and other related terms.
Search block 4: programs	Terms related to various intervention programs, such as “physical activity program*”, “exercise intervention*”, “cognitive training program*”, “intergenerational program*”, “combined physical and cognitive*” interventions, and other related terms.
Search block 5: adult children	Terms focused on offspring and family dynamics, including terms like “adult child*”, “family caregiver*”, “dyad*”, “intergeneration*”, and other related terms.
Search block 6: designs	Terms describing qualitative research designs, such as “qualitative”, “focus group*”, “thematic analys*”, “content analys*”, “in‐depth”, “interview*”, “mixed‐method*”, and other related terms.

Primary databases (i.e., PubMed, MEDLINE, Web of Science, and EMBASE) were searched using a comprehensive search strategy based on the SPIDER framework (Sample, Phenomenon of Interest, Design, Evaluation, and Research type). The search strategy was structured into six distinct search blocks (see Table 1), and consisted of terms related to the following key areas.

The final search strategy was developed using Boolean operators (AND, OR) to combine the search blocks, ensuring a thorough and comprehensive search of the literature across the selected databases. The search blocks were combined as follows:

• (Search block 1 (MCI) + Search block 2a (Challenges) + Search block 3 (Domains)) OR

• (Search block 1 (MCI) + Search block 2b (Needs, Barriers, and Facilitators) + Search block 4 (Programs)) OR

• (Search block 1 (MCI) + Search block 5 (Adult Children) + Search block 2b (Needs, Barriers, and Facilitators) + Search block 4 (Programs)

AND Search block 6 (Designs)

Studies published in English from 2009 onward (i.e., maximum 15 years old) were included if they addressed the cognitive, physical, or psychosocial challenges of MCI patients, or explored the needs, preferences, barriers, or facilitators of MCI patients and/or their adult children related to an intergenerational program, a PA program, a CA program, or a combined PA+CA intervention, with the inclusion of standalone PA or CA programs due to the limited availability of combined PA+CA interventions. Exclusion criteria included studies without full‐text availability, non‐empirical or non‐original works (e.g., reviews), as well as dissertations and theses.

The initial database search yielded 6042 references (see flowchart in Figure 1), which were imported for screening. A deduplication process in Rayyan removed 937 duplicates, resulting in 5105 unique references. Titles and abstracts of these references were screened by three independent reviewers using the artificial intelligence–assisted tool ASReview, which used machine learning algorithms to rank articles based on their relevance. During this phase, reviewers worked independently without access to each other's decisions. A data‐driven stopping criterion was applied, whereby the screening process was halted after 150 consecutive irrelevant articles were identified. This threshold was based on the criterion of 100 as suggested by van Dijk et al., ²⁵ but extended by 50% to increase confidence in the completeness of the screening. This approach balanced efficiency with the likelihood of identifying additional relevant articles, preventing premature or delayed termination of the screening.

FIGURE 1.

Study selection flowchart.

After the initial title and abstract screening, 90 articles were retained for full‐text review. A study was included in this phase if at least one of the three independent reviewers deemed it potentially relevant. The full texts were then assessed in detail against the predefined eligibility criteria. Of these 90 articles, 45 were excluded. The most common reasons for exclusion were: lack of focus on the experiences, needs, or preferences of MCI patients or their caregivers (n  =  29); inclusion of mixed populations without clear stratification or focus on MCI (n  =  9); and studies with a solely objective or biomedical focus (e.g., cognitive measures only without qualitative components; n  =  5). A small number of studies were excluded for other reasons, such as irrelevant interventions or inaccessible full texts (n  =  2). This process resulted in a final inclusion of 45 studies for the scoping review.

Eligible articles underwent systematic data extraction to identify challenges faced by MCI patients and their adult children's needs, preferences, barriers, and facilitators for an intergenerational PA+CA program. The extracted data, detailed in Appendix 1, included meta‐data (authors, title, journal, and year), demographic characteristics (mean age and sex distribution), and study design (research type, sample size, and duration). Interventions were categorized as physical activity (PA), cognitive activity (CA), combined PA+CA, or intergenerational programs (INT). Key outcomes were recorded for MCI patients across the cognitive, physical, and psychosocial domains, or the challenges, needs, barriers, and facilitators related to an intergenerational PA+CA program. Risk of bias indicators, such as blinding, randomization, or other methods to reduce bias, were systematically documented. This structured approach ensured a comprehensive and structured analysis of the challenges, needs, barriers, and facilitators related to an intergenerational PA+CA program.

Aligned with scoping review guidelines, ²⁶ , ²⁷ the findings of the scoping review were reported through a narrative summary of the evidence, along with consideration of implications for research and practice. In line with these guidelines, this scoping review was based on direct presentation of results from the authors of the included studies.

2.2.2. Phase II: semi‐structured interviews

Semi‐structured interviews were conducted with MCI patient–child dyads to gain a deeper understanding of the cognitive, physical, and psychosocial challenges faced by MCI patients, as well as to explore the needs, requirements, barriers, and facilitators for both MCI patients and their adult children regarding an intergenerational PA+CA program. Insights from the scoping review in phase 1 directly informed the content and structure of the phase 2 semi‐structured interview questions, ensuring that they addressed the cognitive, physical, and psychosocial challenges, as well as the needs, preferences, barriers, and facilitators identified in phase 1. By engaging both members of the dyad in the same interview, the shared discussion captured perspectives from both MCI patients and their adult children, while highlighting potential dynamics and interactions between them. A structured PowerPoint presentation served as the interview guide, organizing the discussions and ensuring that all relevant themes were systematically addressed. Data saturation was monitored throughout the interview process, and no new themes emerged in the final two interviews, indicating that thematic saturation was achieved. Interviews were facilitated by a primary researcher (J.L.), supported by two trained assistants (e.g., master's students in health promotion) and lasted ≈ 2 hours. All sessions were audio‐recorded with the explicit prior written informed consent from all participants.

In line with qualitative research guidelines, a sample size of 8 to 10 dyads was considered adequate for the semi‐structured interviews. ²⁸ , ²⁹ Participants were recruited through the Cognitive Center of the University Hospital of Ghent (CCUG) using a targeted homogeneous sampling method. The diagnosis of MCI was made by consensus within a multidisciplinary team at CCUG, involving both a neurologist and neuropsychologist, according to clinical criteria as proposed by Petersen et al. ⁷ Eligible participants were individuals with a confirmed diagnosis of amnestic or non‐amnestic MCI (excluding those with dementia or MCI due to frontotemporal degeneration), who were Dutch speaking, and had at least one adult child (≥18 years). The final sample comprised eight dyads. Sociodemographic and clinical information such as age, sex, education level, and time since clinical diagnosis, was collected through a general questionnaire administered at the beginning of the interviews. Table 2 provides an overview of the participants’ characteristics.

TABLE 2.

Participant characteristics (phase I: interviews).

	MCI patients	Adult children
Number of participants (n)	8	8
Age, in years (range)	62–86	25–55
Sex, % male	37.5	25.0
BMI, kg/m2 (range)	20.2–31.6	20.9–30.4
Employment status, %
Retired	87.5	0
Disabled	12.5	0
Working (full time)	0	75.0
Working (part time)	0	25.0
Living situation, %		NA
Independent, with partner	75.0
Independent, alone	12.5
Other	12.5
MCI type, %		NA
Amnestic	37.5
Non‐amnestic (multidomain)	37.5
Unknown	25.0
Diagnosis, %		NA
Alzheimer's disease	75.0
Lewy body dementia	12.5
Unknown/Other	12.5
Time since diagnosis, %		NA
<6 months	12.5
6 months–1 year	25.0
1–2 years	25.0
2–5 years	12.5
Frequency of contact with adult child, %		NA
(Almost) never	12.5
Monthly	12.5
Several times/week	12.5
Daily	62.5

Abbreviations: BMI, body mass index; MCI, mild cognitive impairment; NA, not applicable.

Thematic analysis was conducted to systematically analyze the data collected from the semi‐structured interviews. This method was guided by the predefined domains identified in the phase I scoping review, allowing for a structured interpretation of recurring patterns and insights relevant to the study objectives. Audio recordings of the interviews were transcribed verbatim to ensure comprehensive data capture. Transcripts were imported into NVivo software for organization and analysis. The analysis involved iterative rounds of coding, with data segments systematically labeled based on predefined themes such as cognitive, physical, and psychosocial challenges, as well as needs and preferences, barriers, and facilitators. To enhance validity and reliability, two researchers independently coded the data. Discrepancies in coding were resolved through discussion, ensuring that the findings accurately reflected the key domains. The synthesized findings were interpreted in alignment with the study's objectives, providing meaningful insights and actionable implications for future research and practice.

3. ETHICAL APPROVAL AND CONSENT

This study received ethical approval from the Committee of Medical Ethics of Ghent University Hospital and is registered as a clinical trial (ClinicalTrials.gov NCT06221579). In addition, the study protocol and supporting documentation were preregistered on the Open Science Framework (OSF) and are accessible via https://osf.io/hkjvz. Participants received an information letter, and informed consent was obtained at multiple stages. Participants were informed about the study's design, purpose, data confidentiality, and their right to withdraw without stating a reason. Data were coded, password protected, and stored securely to ensure privacy. Only researchers within the research team have access to the data.

4. RESULTS

4.1. Study characteristics (phase 1 only)

The 45 included studies used a range of methodologies, including qualitative (n = 30), quantitative (n = 6), and mixed‐methods (n = 9) designs. Sample sizes varied widely, from single case studies to larger studies with > 100 participants. The average sample size across all studies was ≈ 32 participants. The studies examined various aspects of MCI, MCI management, intervention adherence, and barriers and facilitators to engagement, providing valuable insights into the needs and challenges of individuals with MCI and their families. The duration of studies ranged from short‐term interventions lasting 9 weeks to long‐term studies extending up to 66 months.

Regarding the type of interventions studied, the majority focused on experiences related to PA (n = 16) or CA (n = 5) interventions, while some were related to a combination (PA+CA; n = 3). Other studies assessed general experiences related to MCI (n = 8), experiences related to participation in clinical trials or non‐pharmacological PA+CA interventions (n = 6), or focused on caregiver perspectives and support systems (n = 7).

4.2. Participant characteristics

4.2.1. Literature review: phase I

Across the 45 included studies (n ≈ 1031 participants in total), the mean age of MCI patients (n ≈ 774) ranged from 57 to 96 years, with an average across studies of ≈ 74 years. Sex distribution varied, with studies reporting between 16.7% and 100% female participants, and an overall estimated average of 50% to 55% female representation among MCI patients. In studies that included adult children or caregivers (n ≈ 257), their mean age ranged from 58 to 74 years, with a generally higher proportion of female children (ranging from 50% to 88%). In the majority of studies, participants were broadly described as having MCI, without further specification of the MCI subtype. Only four of the included studies explicitly referred to individuals with amnestic MCI (aMCI), typically in the context of Alzheimer's disease (AD) research. In most cases, however, the exact cognitive profile, such as aMCI versus non‐amnestic MCI, was not reported.

4.2.2. Semi‐structured interviews: phase II

In phase II of the study, eight MCI patients (mean age: 75 years) and their adult children participated in semi‐structured interviews (see Table 2 for an overview of participant characteristics). MCI patients were predominantly female and mostly retired, with the majority living independently with a partner. While diagnostic backgrounds varied, three quarters had received a diagnosis of AD. Both amnestic and non‐amnestic (multidomain) MCI subtypes were represented equally, with one quarter of the sample having an unspecified type. Time since diagnosis varied across the MCI group, with some recently diagnosed and others having lived with the diagnosis for multiple years Most participants maintained daily contact with their child, who were on average 42 years old, predominantly female, and generally employed full time.

4.3. Cognitive, physical, and psychosocial challenges experienced by MCI patients

4.3.1. Cognitive challenges

The literature identified various cognitive difficulties commonly experienced by individuals with MCI. These challenges included short‐term memory loss, such as forgetting appointments, tasks, or why they entered a room, as well as long‐term memory problems, such as difficulty recalling names or events. ³⁰ , ³¹ , ³² Additionally, MCI patients reported struggling with maintaining focus and attention, leading to challenges in concentration, sequencing tasks, and multitasking. ³¹ , ³³ , ³⁴ Orientation difficulties, such as challenges with route finding and visuospatial tasks were also reported in the literature, as well as a decline in cognitive flexibility, including the ability to plan, organize, and switch between tasks efficiently. ³² , ³⁵ Problems with verbal communication, such as difficulty finding the right words, following conversations, retaining information during discussions, and reduced spontaneity in speech were also challenges, which complicate social interactions. ³⁰ , ³⁶ Mental fatigue and generally slower cognitive processes were additional burdens noted in MCI patients. ³⁵ , ³⁷ The unpredictable nature and variability of cognitive decline were reported to exacerbate these challenges, affecting motivation and the ability to manage daily activities effectively. ³⁴ , ³⁸ For some, cognitive impairments were described as threatening their perceived identity and roles, adding to psychological distress. ³⁹

The in‐depth interviews with MCI patient–child dyads revealed cognitive challenges consistent with those described in the literature. Short‐term memory difficulties were frequently mentioned, such as misplacing items, forgetting tasks or why they entered a room. One participant said, “If I don't write down my appointments, I forget them completely” (Participant 7). Problems with attention and focus also emerged as significant concerns. A participant expressed, “Concentration is my biggest problem. It all starts with that” (Participant 6), and another participant shared, “When making coffee, I have to focus really hard, otherwise I might mess it up” (Participant 3). Another MCI participant shared: “You can try to do multiple things at once, but it's really an illusion to succeed—it just doesn't work” (Participant 4). MCI patients also reported planning difficulties, often requiring conscious effort to complete even routine tasks; “I used to make coffee automatically, but now I have to think about every step” (Participant 2).

4.3.2. Physical challenges

Physical challenges experienced by MCI patients were reduced mobility, fatigue, and overall physical decline, often manifesting as a slower pace in daily activities and an increased reliance on others for assistance. ⁴⁰ , ⁴¹ These everyday tasks such as cooking, shopping, cleaning, and keeping track of bills and paperwork were therefore described as becoming increasingly difficult. ³² A decline in physical fitness and failure to complete tasks that once signified personal strengths or social recognition were also identified as common physical challenges, further contributing to the sense of loss and frustration reported by MCI patients. ³⁵ , ⁴² Many studies reported a reduction in competencies and (physical) activities, often resulting in the need to give up hobbies or interests. ³² This disruption of activities was often attributed to the increased energy and attention demands, leading to further postponement and inactivity. ³⁴ This shows that physical challenges often intersect with cognitive impairments, creating a feedback loop in which physical challenges exacerbate cognitive decline, and vice versa. ³⁴

The interviews confirmed the physical challenges identified in the literature. Mobility issues were often mentioned, particularly concerning walking, stair climbing, and overall reduced movement. One participant said, “I used to run down the stairs, but now I take them one step at a time” (Participant 8). Several participants also reported muscle weakness, affecting their stability and movement. Balance and coordination difficulties were also highlighted, with one participant stating, “It's not extreme, but it's there” (Participant 1). Fear of falling was a prominent concern, leading to increased caution and avoidance of certain activities: “After falling three times, I decided to stop cycling” (Participant 7). Fatigue was a commonly reported issue, with participants describing both physical and mental exhaustion. One participant noted, “I wake up tired, and after breakfast, I could sometimes fall asleep at the table” (Participant 1). Another expressed, “I need significantly more energy to do anything—it's exhausting” (Participant 2). Sleep disturbances further exacerbated these issues, as one participant explained, “I haven't slept well in a year, and I can't take any medication for it” (Participant 6). Chronic pain, particularly in the back and joints, was another major concern, limiting movement and daily activities. One participant shared, “I have pain in my neck and muscles regularly” (Participant 6). Some participants also struggled with stiffness and reduced flexibility, impacting their ability to complete tasks such as bending down or getting up from the floor: “I tried a Pilates class, but the moment I had to lie on a mat, I realized I couldn't get back up” (Participant 1). A decline in physical activity was also a concern, with participants noting that they had to give up activities they once enjoyed: “I used to walk, run, and swim, but my knees and hips won't let me anymore” (Participant 8). Some reported a growing reliance on others for daily tasks: “I used to be independent, but now I need my wife's help more and more” (Participant 5). Another participant expressed frustration over these limitations, stating, “I signed up for swimming, but I stopped with that because after swimming I can't find my clothes anymore” (Participant 8).

4.3.3. Psychosocial challenges

MCI patients frequently reported to experience significant psychosocial challenges, including changes in personality and behavior, increasing dependence, and negative impacts on mood and emotions. ³⁰ The progressive nature of cognitive decline was described as often leading to heightened uncertainty and loss of self‐confidence. ³⁸ , ³⁹ MCI patients reported to withdraw socially, feel overprotected by family members, and lose close friends due to their condition. ³¹ The emotional burden of cognitive impairment was further exacerbated by societal stigma, with MCI patients reporting fear of being perceived as incompetent or dependent. ⁴⁰ , ⁴³ People with MCI reported to experience social exclusion and embarrassment due to their memory difficulties, which could lead to further withdrawal from social activities. ³³ , ⁴⁴ In some cases, individuals reported to disengage from previously enjoyed leisure activities, as difficulties in recalling shared experiences or names were said to create additional stress in social interactions. ⁴⁴ Feelings of frustration, sadness, and anxiety were commonly reported, with many individuals reporting an increasing sense of incompetency and worthlessness as their cognitive abilities decline. ⁴² Emotional responses to cognitive challenges were found to vary, with some individuals feeling overwhelmed by the unpredictability of their condition, while others sought reassurance through a formal diagnosis, which could provide a sense of acceptance. ⁴⁵ Additionally, some individuals with MCI reported to struggle with apathy, experiencing reduced motivation, engagement, and interest in daily activities, further affecting their emotional well‐being. ⁴⁰ The intersection of cognitive, emotional, and social challenges could disrupt daily life and contribute to a negative self‐image, particularly when individuals felt they were no longer capable of maintaining their independence. ³⁹ , ⁴⁶

The interviews revealed a broad spectrum of psychosocial challenges experienced by MCI patients, confirming and deepening the insights from the literature. Many participants described a loss of independence and control over their daily life. For example, one participant shared, “There are things in the house that need to be done, but I can't manage them myself anymore, so I have to ask someone else,” highlighting the growing dependence on others for routine tasks (Participant 2). Several participants expressed emotional distress due to their cognitive limitations. This distress often manifested as frustration, stress, or shame. One participant shared, “I find it hard that I make so many mistakes; it really bothers me” (Participant 6), while another noted, “If I forget something, I get really annoyed with myself and think, ‘Come on, did I forget that again?’” (Participant 7). Participants also mentioned feelings of fear and panic in response to everyday situations, especially when confronted with unexpected questions or forgotten items. One said, “I panicked when I couldn't find my pills. Eventually I found them in the cupboard, in an empty box. But why I've put them there—I have no idea” (Participant 1). Anxiety about the future and a diminished sense of self‐worth were also recurring themes. One participant explained, “Sometimes I wonder how much time I have left … what if my Alzheimer's gets much worse in 10 years?” (Participant 5). Another expressed, “Since the diagnosis, I feel like I've lost a part of myself” (Participant 6). Social withdrawal was also common. Participants often reported limited contact with friends or former colleagues. “I only have contact with my family. The rest—all my former colleagues—are gone. I don't hear from anyone anymore” one participant said (Participant 1). Others acknowledged avoiding social situations due to communication difficulties or overstimulation: “I find it hard to start new conversations. If the topic is something I know, then it's fine, because I don't need to remember anything” (Participant 2). Feelings of uselessness, apathy, and diminished motivation were also prevalent across the interviews. Participants spoke of no longer enjoying activities they once loved or lacking the energy to begin something new. Others explained how their sense of purpose had faded. “Since I had to give up my job as a nurse, I don't do anything anymore. No one trusts me anymore” one participant said (Participant 8). Emotional vulnerability and low self‐esteem were also present throughout the interviews. One participant stated, “My self‐image has never been good, and now it's even worse” (Participant 6). For some, this internal struggle was compounded by shame: “This disease is the worst thing that can happen to you—it's humiliating” (Participant 6). Others spoke about feeling guilty for burdening their loved ones: “I know my son would help, but I don't want to bother him” (Participant 3). The interviews also highlighted the complex interplay among cognitive, emotional, and social difficulties. Participants frequently mentioned how one domain affected the other, creating a cumulative impact on their well‐being. As one participant concluded, “If my physical symptoms would improve, I think I would feel better mentally too” (Participant 1).

4.4. Needs and preferences, barriers and facilitators related to an intergenerational PA+CA program

4.4.1. Needs and preferences (MCI patients)

MCI patients emphasized the need for structured and predictable routines, as well as familiar surroundings to help maintain a sense of stability. ³¹ They reported to prefer clear and simple instructions, supported by visual aids and written materials, to aid in recall and comprehension. ⁴⁵ , ⁴⁷ Face‐to‐face communication with professionals and the opportunity to discuss concerns before participation were valued, alongside personalized feedback on progress. ⁴⁸ , ⁴⁹ Social aspects were reported to play a crucial role in engagement. Many MCI patients preferred activities with peers of a similar age and cognitive status, fostering a sense of belonging and comfort. ³² , ⁴³ Social support—from family, caregivers, or exercise companions—was considered essential for maintaining motivation. ⁴³ , ⁵⁰ Personally meaningful activities that align with lifelong interests were reported to enhance adherence, as well as the ability to retain autonomy and control over activity choices. ⁴⁰ , ⁵¹ Some patients said finding goal‐setting and progress monitoring motivating, though others reported to prefer a more flexible approach. ⁴⁶ , ⁵² Enjoyment was identified as key, as MCI patients were more likely to engage in activities they find pleasurable and that allow them to participate at their own pace. ⁵² A welcoming, non‐intimidating exercise environment, supervised by knowledgeable professionals, was preferred, ⁴³ and encouragement and emotional support from professionals, caregivers, and peers were reported to significantly enhance engagement. ⁵⁰

The interviews complemented the insights from the literature. A strong desire for personalized, tailored activities emerged across interviews, with participants stressing the importance of physical and mental tasks that are adapted to their individual capabilities. As one participant said: “It has to be tailored. I want professionals who know what I can and can't handle” (Participant 1). The need for structure and routine was consistently highlighted, with several participants emphasizing that regularity and predictability help them engage more easily: “Routine is important—it needs to fit easily into my daily schedule” (Participant 1). Others echoed this by expressing the value of clear planning and simple, step‐by‐step instructions: “If it's too complex, I get stuck immediately” (Participant 2); “There has to be some structure, otherwise it just won't happen” (Participant 4). Emotional safety and a calm environment were also key preferences. One participant noted, “A safe space is important to me” (Participant 1), while another mentioned music as a source of comfort: “I always need music around me—it keeps me calm” (Participant 1). Many participants emphasized the importance of enjoyment and intrinsic satisfaction, valuing activities that offer relaxation rather than competition: “I want to feel good doing it, not necessarily achieve anything” (Participant 4); “It's not for others, but for myself—it makes me feel proud I did it” (Participant 4). Social interaction was another recurring theme. Some participants appreciated group settings for the sense of connection and gentle comparison they offer: “In a group, you can compare yourself with the person next to you—it's motivating” (Participant 7); “I feel better around people—I enjoy that kind of contact” (Participant 6). Others preferred one‐on‐one support or peer contact, especially with individuals who share similar experiences: “I'd value the opportunity to exchange experiences with others who go through the same” (Participant 6); “I like talking to someone while doing something—it helps me keep going” (Participant 8). Several MCI patients mentioned a desire for mental stimulation and ongoing learning: “I like to stay mentally active—I read every day and want to keep learning” (Participant 3). One participant also expressed interest in gaining more knowledge about MCI itself: “I'd like to know more about how MCI evolves—it really interests me” (Participant 4). Last, some participants expressed a need for external motivation and follow‐up, admitting they might struggle to maintain participation on their own: “You'll have to push me a bit if you want me to keep doing it” (Participant 3); “I need follow‐up to make sure I stick with it” (Participant 3).

4.4.2. Barriers (MCI patients)

Several cognitive, physical, psychological, and logistical barriers were reported to hinder MCI patients’ participation. Cognitive concerns, such as fear of being perceived as incompetent or frustration with memory difficulties, were described as reducing motivation. ³³ , ⁴⁰ Uncertainty about program content, including difficulty understanding the purpose or expectations, was reported to discourage participation. ⁴⁵ , ⁵⁰ Physical barriers such as mobility issues, (chronic) pain, visual impairments, and fatigue were commonly found to limit participation. ⁴³ , ⁵³ Health concerns, illness, and pre‐existing conditions were often found to interfere with long‐term adherence. ⁵² , ⁵⁴ Some individuals reported to struggle with transportation challenges, particularly if they can no longer drive or require assistance to attend program sessions. ³³ , ⁴⁸ A lack of intrinsic motivation was identified as a major barrier, with some individuals struggling to stay engaged in activities they do not find personally meaningful. ⁴³ Additionally, perceived lack of progress or a program that does not meet expectations was reported to lead to disengagement. ⁵⁰ , ⁵³ Some individuals said they already get enough physical activity in daily life, reducing the perceived need for structured exercise. ³² Environmental factors also were described as playing a role. Difficult program locations, financial constraints, and inadequate facilities were reported to deter participation. ⁵¹ , ⁵² Fear of falling, safety concerns, and discomfort in group settings were reported to lead to avoidance of certain activities. ⁵² Some patients said to find structured programs too rigid and prefer activities that allow flexibility and autonomy. ⁴⁶

The interviews highlighted a wide range of barriers that may hinder participation in an intergenerational PA+CA program. These challenges were in line with the literature and added further nuance and lived experience. Physical limitations and fatigue were commonly reported. Several participants described pain or reduced mobility as major obstacles: “If I lie down, I can't get up by myself” (Participant 1); “Because of my surgeries, I have to be careful with what I can still handle physically” (Participant 6); and “Sometimes my muscles hurt, but I try to stay active anyway” (Participant 5). Fatigue—both physical and mental—was a recurring theme: “It feels like I have to make four times more effort to understand something” (Participant 2). Cognitive difficulties, especially with memory and concentration, were also reported as barriers: “I have to write things down or I forget them” (Participant 5); “I did that exercise three times and still had to ask again: what was the instruction?” (Participant 1). Lack of motivation and difficulties maintaining long‐term engagement were frequently mentioned. Some participants admitted to losing interest quickly: “I start something and then after a while I don't feel like continuing” (Participant 4), and “If it's just something to do at home, I'll do it twice and then I stop” (Participant 4). Others shared that structured follow‐up was essential to keep them going: “You do it twice and then you forget about it” (Participant 4); “You'll have to keep pushing me to make me stick with it” (Participant 3). Transportation and logistical barriers were also mentioned, such as no longer being able to drive or difficulty accessing facilities: “I can't drive anymore, so I depend on others or public transport” (Participant 6); “If the distance is too far to bike, I don't get there easily” (Participant 8). Practical challenges were also highlighted, such as poor home setups for exercise: “My furniture is arranged in a way that makes it hard to exercise at home” (Participant 7). Finally, some participants described emotional barriers, including fear, shame, or worry about being a burden: “Because of my condition, I sometimes feel anxious and ashamed—that definitely plays a role” (Participant 6), and “I worry more about bothering others” (Participant 6).

4.4.3. Facilitators (MCI patients)

Several factors were reported to enhance program participation and adherence in MCI patients. Altruism and curiosity about their health were described as motivating MCI patients to engage in such programs, particularly if they see benefits for themselves or future generations. ⁵⁴ , ⁵⁵ Physician referrals and recommendations from trusted professionals were found to play a significant role in fostering engagement. ⁵⁶ Social factors were identified as critical facilitators. The presence of a familiar companion during sessions was reported to significantly increase motivation. ⁴³ Patients also valued programs that provide emotional support and a welcoming, non‐judgmental environment, reinforcing feelings of comfort and acceptance. ³⁶ , ⁵⁷ Feeling in control and having autonomy over their participation was described as a strong motivator. ⁴⁰ Enjoyment, structure, and personal relevance appeared to be the most effective strategies in motivating MCI patients. Flexibility in scheduling, a variety of activity options, and support from professionals and peers were reported to enhance long‐term adherence. ⁴⁹ Programs were recommended to include habit‐formation techniques, reminders, and self‐monitoring strategies to help patients stay engaged. ⁴⁶ , ⁵⁸ Additionally, providing clear information about the benefits of participation and ensuring realistic expectations was reported to help sustain engagement. ⁵⁹

The interviews revealed a variety of facilitators that closely align with the existing literature. Enjoyment, satisfaction, and a positive experience were among the most commonly cited motivators. Participants emphasized that pleasure and emotional reward were key: “I would do it because I enjoy it—otherwise I wouldn't even start” (Participant 2), “It's not about goals, it's about enjoying myself and feeling satisfied afterwards” (Participant 4), and “If I feel like, ‘I was still able to do that’—then that's a boost” (Participant 1). Structure and routine were again emphasized as helpful in maintaining long‐term engagement: “Routine is very important, so it has to fit easily into your daily rhythm” (Participant 1). Similarly, gradual progression in activity was mentioned as being motivating. Many participants valued social interaction, whether in group settings or one on one: “Exercising together is more fun than doing it alone—it keeps you going” (Participant 3); “Being around people lifts me up” (Participant 6); and “Spending time together—that sense of connection feels really good” (Participant 6). Some highlighted the value of peer support and shared experience, noting: “It's helpful to exchange experiences with people who go through the same” (Participant 6). Tailored and accessible activities were also considered facilitators, especially when adapted to individual needs: “It has to be specifically adjusted to your physical and mental condition” (Participant 1). Others appreciated low‐threshold activities integrated into daily life, such as: “If you'd say: every Wednesday go for a walk with the dog—that I could see myself doing” (Participant 4). Cognitive engagement and mental stimulation played a role for some: “I've always done crossword puzzles—I like keeping my brain active” (Participant 6). Other facilitators included the presence of music (“I always need music around me” [Participant 1]), better sleep after physical activity (“After some exercise, I sleep so much better” [Participant 7]), and support from family or caregivers (“We have a strong care network—that really helps” [Participant 5]). The option to bring a companion was also appreciated: “Can you bring someone to come along?” (Participant 6). Finally, several participants highlighted a positive mindset and emotional openness as internal facilitators: “I know what's going on, but I try to make the best of every day” (Participant 3), and “The focus should be on creating a good atmosphere—that matters for others, and for yourself too” (Participant 3).

4.4.4. Needs and preferences (MCI patients’ children)

Children of MCI patients emphasized the value of being included in the program to support their parent and enhance engagement. ⁶⁰ They played a key role in facilitating participation, particularly by helping with transport and overcoming logistical barriers. Many expressed a strong need for clear, practical information about MCI and guidance on how to support their parent. ⁶¹ , ⁶² Emotional and social support was also considered important; connecting with others in similar situations was reported to foster acceptance and reduce isolation.

Interviewed children highlighted a shared desire for meaningful and enjoyable joint activities: “I'd love to do more meaningful things together” (Child 5). They valued programs that match their parent's abilities: “Good professional support that considers what's realistic for my mother is really important to me” (Child 1). A relaxed atmosphere was preferred: “It's important that it's a positive and relaxing experience” (Child 1). While some appreciated connecting with peers, others were neutral: “I don't really feel the need to talk with other children of MCI patients” (Child 4). Many expressed a need for better information about MCI: “I'd appreciate some explanation about MCI—I don't know much about it” (Child 1). The wish to take responsibility and contribute to their parent's well‐being was common: “I feel responsible as a daughter and I really want to be involved” (Child 5). Practicality and routine were also important: “If we could just go for a walk together at set times, that would work” (Child 4).

4.4.5. Barriers (MCI patients’ children)

Children faced challenges in balancing their parent's independence with needed support. Constantly motivating an apathetic parent was described as emotionally taxing. ⁵¹ A lack of time and structured information often hampered their ability to engage meaningfully in support or programs. ⁶¹

Time constraints were the most cited barrier: “With a full‐time job and young kids, finding time isn't easy” (Child 8). Emotional and logistical overload were also concerns: “I don't want the program to bring extra work—I'm already managing a lot” (Child 5). Long travel times and energy levels posed obstacles: “Driving to a certain location every day really isn't feasible” (Child 7). Some were unsure whether mutual motivation existed: “If she goes, I'll go too—but I don't know if she'd feel the same way if it were the other way around” (Child 4). Others questioned the necessity of their own involvement: “There are probably activities that are good for her, even if we're not there” (Child 4).

4.4.6. Facilitators (MCI patients’ children)

Positive evaluation, empathetic professionals, and the absence of financial barriers motivated participation. ⁵⁰ Opportunities to express concerns in a safe environment and to better understand their parent's condition also strengthened engagement. ⁶³ Observing benefits in their parent reinforced motivation and well‐being. ⁵⁷

Joint participation was seen as valuable: “Just doing things together is fun, and we can support each other at times” (Child 1). Strengthening the family bond and supporting the parent were strong motivators: “Providing support is something that motivates me anyway” (Child 1). The emotional reward of contributing to their parent's well‐being was important: “That sense of satisfaction matters—thinking: look, I was still able to do that for her” (Child 1). Participants also appreciated the dual focus on health and connection: “It's motivating when the program helps with both well‐being and our relationship” (Child 1).

5. DISCUSSION

This study aimed to identify the cognitive, physical, and psychosocial challenges experienced by individuals with MCI, and to explore the needs, preferences, barriers, and facilitators of both MCI patients and their adult children regarding participation in an intergenerational program combining cognitive and physical activity (PA+CA). By integrating findings from a scoping review and in‐depth semi‐structured interviews with MCI patient–child dyads, this study provided a comprehensive and nuanced understanding of the complex realities and needs of this population. These insights contribute to the development of a tailored, feasible, and meaningful intergenerational PA+CA intervention that acknowledges the shared and individual experiences of both generations.

5.1. Cognitive, physical, and psychosocial challenges

Consistent with the existing literature, ³⁰ , ³¹ , ³² our findings confirmed that MCI patients experienced considerable cognitive challenges, particularly related to memory, attention, and executive function. The interviews emphasized how these difficulties interfered with everyday activities and self‐confidence, leading to emotional distress, frustration, and anxiety. These cognitive difficulties were compounded by physical challenges, including reduced mobility, fatigue, and pain, as also reported in previous studies. ⁴⁰ , ⁴¹ Our findings highlighted the cumulative impact of these challenges, with physical limitations often increasing cognitive burden and vice versa, resulting in a cycle of reduced engagement and increased dependency. Psychosocial challenges were particularly pronounced, with feelings of shame, loss of identity, social withdrawal, and fear of the future emerging as prominent themes. The emotional burden experienced by participants underscored the need for supportive environments that foster autonomy, dignity, and social connectedness. These findings aligned with earlier work pointing to the psychological toll of MCI, including reduced self‐worth and perceived stigma. ³⁹ , ⁴³ Notably, several participants expressed existential concerns and emotional vulnerability, suggesting that psychosocial support should be a core component of any intervention targeting this population.

5.2. Needs and preferences

MCI patients in this study expressed a clear preference for structured, predictable, and personalized activities that respected their cognitive and physical limitations, while also providing enjoyment and meaning. These findings were consistent with prior research emphasizing the importance of routine, clarity, emotional safety, and social support in intervention design. ⁴³ , ⁴⁵ , ⁴⁶ Importantly, many participants preferred activities that offered intrinsic satisfaction rather than external achievement, pointing to the role of positive affect and autonomy as drivers of intervention engagement. Social interaction emerged as both a motivator and a support mechanism. While some participants valued group settings, others preferred one‐on‐one engagement, especially with familiar individuals or peers with similar experiences. This reinforces the need for flexibility and personalization within the intergenerational program. Moreover, both patients and their children highlighted the value of shared experiences, which can strengthen familial bonds and foster mutual understanding.

5.3. Barriers and facilitators

Our study confirmed that a variety of cognitive, physical, emotional, and logistical barriers may hinder participation in a PA+CA program. In line with previous research, ⁴³ , ⁵² fatigue, mobility issues, cognitive overload, lack of motivation, and logistical constraints (e.g., transportation, time limitations) were identified as key barriers. The interviews added rich insights into how these barriers were experienced in everyday life, underscoring the need for interventions to be low threshold, flexible, and responsive to both physical and psychological vulnerability. Facilitators included emotional support, enjoyment, positive routine, and the possibility of meaningful social connection. The involvement of knowledgeable and empathetic professionals, the presence of a familiar companion, and the creation of a safe and positive atmosphere were particularly valued. Interestingly, participants emphasized that emotional climate and relational dynamics were often as important—if not more so—than the specific content of the activities. Notably, none of the participants explicitly mentioned the potential of such a program to slow cognitive decline or alter the course of MCI as a reason for participation. While cognitive challenges and fears about decline were present, participants predominantly valued programs for their emotional, social, and routine‐based benefits. This suggests that the potential clinical impact of PA+CA may not be the central or consciously recognized motivation for individuals with MCI. Future interventions could therefore benefit from carefully balanced communication that raises awareness of potential cognitive benefits, without overshadowing the experiential and relational aspects that appear to matter most to participants. Moreover, the broad variation in needs and preferences, barriers and facilitators underscore that a “one‐size‐fits‐all” approach is unlikely to be sufficient. Instead, some personalization and adaptability are important in designing such programs.

5.4. Involvement of MCI patients’ children

MCI patients’ adult children play a crucial role in enabling and sustaining MCI patients’ participation, not only by offering logistical and emotional support, but also by shaping the social and motivational context in which the intervention occurs. Their involvement, however, is also shaped by their own constraints, including time limitations, caregiving fatigue, and emotional burden. While previous studies have noted these challenges, ⁶¹ , ⁶² our interviews revealed that adult children experienced a tension between the desire to help and the need for balance in their own lives. Programs must therefore avoid placing excessive responsibility on adult children and instead offer flexible formats that allow for meaningful participation without additional stress. Nevertheless, joint participation was seen as an opportunity to strengthen the parent–child bond, improve mutual understanding, and experience shared moments of joy and accomplishment. These findings suggest that intergenerational programs may offer not only health benefits, but also relational and emotional benefits for both parties.

5.5. Strengths and limitations

A key strength of this study lies in its mixed‐methods approach, integrating evidence from a scoping review with rich, in‐depth interview data. This combination allowed for triangulation and validation of findings across sources and perspectives. The inclusion of both MCI patients and their adult children within the same interviews further enhanced the ecological validity and relational depth of the findings. Limitations include the relatively small and regionally specific sample, which may limit generalizability. While efforts were made to capture diverse perspectives, the participants may represent a more motivated and engaged subgroup of MCI patients and caregivers. Furthermore, because interviews were conducted in dyads, there is a possibility that participants moderated their responses in the presence of their relative. Future research may benefit from including individual interviews or follow‐up sessions to capture more sensitive topics.

5.6. Implications and future directions

The results of this study offer clear guidance for the development of an intergenerational PA+CA program for MCI patients and their adult children. Such a program should prioritize emotional safety, personalization, low‐threshold entry, and enjoyment. Both logistical and relational facilitators should be leveraged to enhance engagement and sustainability. Furthermore, the findings underscore the value of addressing the psychosocial and emotional realities of both patients and their children, in addition to their cognitive and physical needs. Future research should explore the implementation and effectiveness of such a program, paying particular attention to long‐term adherence, emotional well‐being, and relational outcomes. Moreover, a broad inclusion of underrepresented populations and diverse family structures will be essential to ensure equity and scalability of the intervention.

6. CONCLUSION

This study provides a comprehensive and nuanced understanding of the challenges, needs, preferences, barriers, and facilitators experienced by both MCI patients and their adult children in relation to participation in an intergenerational cognitive and physical activity (PA+CA) program. By integrating findings from a scoping review with in‐depth insights from dyadic interviews, the study highlights the multifaceted realities of living with MCI and caregiving within a parent–child relationship. The results underscore the importance of designing tailored, accessible, and emotionally supportive interventions that prioritize structure, enjoyment, and social connection. Successful intergenerational programs must address not only cognitive and physical needs but also the psychosocial and relational dimensions that influence engagement and well‐being in both generations. Future studies should focus on developing, implementing, and evaluating such programs in real‐world settings, ensuring they are adaptable to diverse needs and life contexts. By doing so, intergenerational PA+CA programs have the potential to promote meaningful participation, enhance quality of life, and strengthen family bonds in the context of MCI.

CONFLICT OF INTEREST STATEMENT

The authors, Julie Latomme, Tim Van Langenhove, Marijke Miatton, and Greet Cardon, declare that they have no conflicts of interest related to this work. Author disclosures are available in the supporting information.

TRIAL REGISTRATION NUMBER

This study is registered as a clinical trial (clinicaltrials.gov, ID number: NCT06221579).

Supporting information

Supporting Information

Supporting Information

Latomme J, Van Langenhove T, Miatton M, Cardon G. A scoping review and comprehensive needs assessment for developing an intergenerational cognitive and physical activity program for MCI patients and their adult children. Alzheimer's Dement. 2025;21:e70696. 10.1002/alz.70696