Efficacy and impact of spousal support groups in enhancing the well-being of caring in early onset dementia: Lessons learned from the ACE Alzheimer center Barcelona

Abstract

Background: The group intervention aimed at caregivers of persons with dementia is regarded as an effective tool for support and education. However, these groups do not specifically cater to caregivers of individuals with spouses affected by young-onset dementia. Objective: To assess the effectiveness of a support and training group specifically targeted towards spouses of individuals with young onset dementia and its impact on reducing caregiver burden. Participants and Methods: Participants were recruited from a single memory clinic in Catalonia, Spain. The Zarit Burden Interview (ZBI) was utilized to evaluate caregiver burden both before and after participation in the support groups and a combined quantitative and qualitative analysis approach was employed. Results: A total of 77 caregivers were included and assessed, comprising 45.5% females with a mean age of 55 years and 54.5% males with a mean age of 63 years. While the overall caregiver burden, as measured by the ZBI, did not exhibit a significant reduction following participation in the group sessions, a notable decrease in ZBI scores was observed among caregivers with the highest burden at baseline. Three key stages were identified throughout the sessions: (1) discussions pertaining to the type of dementia and its associated changes; (2) the provision of care and attention to spouses along with the exchange of information among participants; and (3) identification of caregivers’ needs. Conclusions: The subgroup of caregivers of persons with young onset dementia who exhibited the highest burden at baseline derived the greatest benefit from the support groups. Various qualitative indicators.

Keywords

early-onset dementia spouse caregivers support group caregiver overload caregiver burden social work qualitative analysis

Background

Dementia encompasses a range of clinical conditions characterized by progressive cognitive decline, leading to diminished social and physical functioning (Shin, 2022; Wiggins et al., 2023; American Psychiatric Association [APA], 2013; Information, Evaluation and Quality Health Agency in Catalonia, [AIAQS], 2010). The need for specialized care and support places a considerable burden on health and social service systems, both in terms of medical and long-term care and social costs. These include the loss of work productivity of family members who take on the role of caregivers, as well as the emotional and financial impact on families. In Spain, the total annual costs associated with dementia amount to €8,268.5 M. Of these, €269.8 M are out-of-pocket costs for families, including medical and care expenses not covered by the healthcare system. Additionally, €7,317.3 M represents informal care costs, reflecting the value of the time and effort that unpaid family caregivers dedicate. The remaining costs are due to health system and long-term care expenses, including medical care, therapies, medications, and specialized services provided by the state (Meijer et al., 2022).

Currently, approximately 50 million persons worldwide are affected by dementia, with projections estimating this number to reach 152 million by 2050 (Shin, 2022; World Health Organization [WHO], 2020; Livingston, Huntley, et al., 2020; Patterson, 2019). While age remains a primary risk factor for dementia, it is noteworthy that 9% of cases manifest before age 65, termed as young onset dementia (Esteban et al., 2021; Hendriks et al., 2023; Lambert et al., 2014; WHO, 2017; Wiggins et al., 2023).

Young-onset dementia stems from various causes, including neurodegenerative disorders such as Alzheimer’s disease and Frontotemporal dementia; along with psychiatric, cerebrovascular, inflammatory, traumatic, and toxic-metabolic syndromes (Hendriks et al., 2023; Rossor et al., 2010; Wiggins et al., 2023).

The progression of dementia often entails unpredictable challenges that are difficult to manage and resolve. Many of these situations evolve into problems requiring specific understanding and adequate preparation from caregivers. However, everyday experiencee do not equip caregivers with the requisite knowledge and skills address such issues, posing challenges for family members to acquire them independently (Helvik et al., 2024; Cañabate et al., 2017; Gibson et al., 2014).

The caring for people with dementia can be challenging for their relatives and impact the overall well-being of the entire family (Lambert et al., 2014; Wiggins et al., 2023). Therapeutic and educational groups have emerged as supplements to natural social networks and community healthcare services to address this challenge, increasingly being integrated into healthcare and social service centers, particularly in regions like Catalonia, Spain (Dam et al., 2016; Walter & Pinquart, 2020; WHO, 2017; Zarit et al., 1987; Zarit et al., 2003). Catalonia has witnessed a growing interest in developing group intervention projects, exemplified by initiatives like the “Towards a new public system of care in the community” project, which has been offering emotional support and mutual aid groups to non-professional caregivers of persons with dementia and other disabilities since 2010 (Benet et al., 2022; Bullich et al., 2022).

Previous experience in our center revealed that general support groups for family members of individuals with dementia did not meet the specific needs of those caring for relatives with young onset dementia. Consequently, these caregivers often discontinued participation due to an inability to identify with Group situations and members, despite their ongoing need for assistance. In response, we aimed to create and assess the impact of specialized support groups designed to address the specific demands of this population.

The aim of the present study is to understand the group dynamics that are established in support groups for spouses of individuals with young onset dementia and to assess the extent to which these groups serve as effective tools for reducing the impact of caregiving.

Persons and methods

Study setting

This observational study was conducted at the Memory Clinic from Ace Alzheimer Center Barcelona (ACE).

Participants

Participants were recruited from various sources between 2011 and 2018, including the memory clinic at ACE, primary health and social care centers, and individuals contacting us through our website. Eligible participants were spouses serving as primary caregivers for individuals diagnosed with young onset dementia (NINCDS-ADRA; NIA-AA; NINDS-AIREN; Neary et al., 1998; McKeith et al., 2005). The inclusion criterion was being the spouse of a person with dementia aged under 65. Individuals with dementia residing in care facilities or lacking a formal caregiver relationship were excluded to ensure homogeneity within the groups. Participation was not restricted to Barcelona residents; individuals from various cities in Catalonia were included.

Intervention

The support groups had both therapeutic and educational components. The therapeutic aspect aimed to enhance emotional coping abilities related to the partner’s dementia through guided group discussions and stress management techniques. The educational aspect aimed to impart the knowledge and skills necessary for caregiving, including practical workshops on daily care routines and informational sessions on understanding dementia progression. Sessions were held biweekly, each lasting 90 minutes, and facilitated by a psychologist specializing in dementia and group therapy. An observer, an anthropologist and social worker, attended sessions to document content, participant interactions, and group dynamic. Sessions were open-ended, prioritizing topics emerging during discussions over pre-planned agendas.

Data collection

To understand group dynamics, we longitudinally observed session dynamics, focusing on emergent themes and participant discourse. Data were collected before and after the intervention, encompassing clinical status, care structure, and caregiver burden (Zarit et al., 1980). Sociodemographic and clinical data included dementia etiology, stage (Clinical Dementia Ratio), and cognitive status (Mini-Mental State Examination), obtained from medical records (Folstein et al., 1975; Hughes et al., 1982). The Zarit Burden Interview (ZBI) scale was used to assess caregiver burden (Martin et al., 1996; Zarit et al., 1980).

Following the support group sessions, participants completed a satisfaction questionnaire, including three open-ended questions and one closed-ended question. Additionally, the Zarit Burden Interview (ZBI) scale (Martin et al., 1996; Zarit et al., 1980) was administered. All data collected were then entered into a dedicated database.

Analysis

Quantitative and qualitative data were analyzed to evaluate intervention effectiveness. Descriptive statistics summarized sociodemographic and clinical variables. Changes in ZBI scores pre- and post-intervention were analyzed using a paired t test. The ZBI score was calculated as the difference between post-intervention and pre-intervention scores (ZBIpost - ZBIpre). Zarit burden categories were established according to previous publications as none (22–46), mild (47–55), and intense (56–110) (Martin et al., 1996; Zarit et al., 1980). Employment activity of the caregiver was grouped into three categories: active, not working, and resigned from a job to provide care due to sample size constraints. Linear regression was conducted to identify factors associated with improved burden post-intervention, adjusting for pre-intervention ZBI burden category, gender, caregiver and patient age, dementia status, Clinical Dementia Rating (CDR), Mini-Mental State Examination (MMSE) score, and caregiver employment status.

All analyses were performed using R statistical software (version 4.1.3), and significance was set at p < .05.

A qualitative analysis of the participants’ narratives, the content of the sessions, and their dynamics was carried out from an ethnographic perspective. Significant segments of their discourse were coded, establishing thematic groupings that allowed for the contextualization and interpretation of the data. Each topic had a central organizing concept, capturing a significant pattern or aspect of the data related to the research object. The findings were validated using triangulation techniques, which included interviews and questionnaires before and after group intervention, observation by the anthropologist, and bibliographic analysis, in addition to feedback from the participants. This approach ensured the coherence and reliability of the results. The participants’ speeches were transcribed verbatim and anonymized to maintain confidentiality.

Ethical approval

The study protocol received approval from the ethics committee from the Hospital Universitari de Bellvitge (Hospitalet de Llobregat, Spain). The study was conducted in accordance with Helsinki Declaration as revised in 2013. Informed consent was obtained from all participants.

Results

To provide a coherent presentation of the results, we will begin with the socio-demographic and clinical data of the participants’ family caregivers, followed by the socio-demographic and care structure data of the participants themselves. Subsequently, we will delineate the three identified phases of group dynamics and their structure. We will then proceed with an analysis of the ZBI results, highlighting significant variations and trends. Finally, we will evaluate the overall experience, integrating participant perceptions and reflections to offer a comprehensive understanding of the impacts and outcomes.

Caregivers’ socio-demographic characteristics

Between 2011 and 2018, 11 groups were created, involving 116 spouses (with 9–13 participants per group). Here we present data from 77 participants who completed the questionnaires. The demographic characteristics of caregivers and persons living with dementia are summarized in Tables 1 and 2.

Table 1.

Caregiver’s characteristics.

Characteristics	Mean (range) or frequency
Caregivers (Spouses)
Age (years)	59.7 (35–71)
Gender
Female/Age (years)	45.5%/55 (35–66)
Male/Age/(years)	54.5%/63 (47–71)
Care
Alone	71.40%
With a family member	13.00%
With more than one family member	5.60%
Employment status
Active	45.50%
Quited a job to care	16.90%
Retired	22%
Never worked	11.70%
Other	3.90%
Zarit burden interview score
Pre-Intervention	59.1 (26–91)
Post-Intervention	61.8 (29–95)
∆Zarit	2.66 (−39–37)

Table 2.

Persons with dementia characteristics.

Characteristics	Mean (range) or frequency
People whit dementia
Age (years)	59.6 (45–65)
Gender
Female/Age (years)	54.5%/62 (47–65)
Male/Age (years)	45.5%/59 (45–65)
Dementia type
Alzheimer’s disease	61.00%
Other dementia	39.00%
Mini-Mental State Examination (MMSE) score
>24	16.9%
18–24
10–17
<10	31.2%
Global Deterioration Scale (GDS)
Moderate cognitive decline (GDS-4)	41.60%
Moderately severe cognitive decline (GDS-5)	36.40%
Severe and very severe cognitive decline (GDS-6)	22.10%
Clinical Dementia Rating (CDR)
Mild (CDR-1)	41.60%
Moderate (CDR-2)	37.70%
Severe (CDR-3)	20.80%
Labor status at diagnosis
Active	50.60%
Unemployed	7.80%
Sick leave	18.20%
Disability	15.60%
Pre-retirement	3.90%
Others	3.90%

The average age of the participants was 59.7 years, and 45.5% being females. Most caregivers provided care independently, while those receiving support tended to rely on children or parents. Among active workers, 65.7% were females. Additionally, 32.5% of the caregivers had a child under 18 years with 31.4% of them remaining employed while fulfilling caregiving responsibilities.

In terms of perceived health, 27.3% reported a deterioration in physical condition due to caregiving, while emotional challenges were prevalent with 77.9% feeling sad, and 55.8% experiencing lonleliness. Moreover, 61% noted lack of support.

The mean ZBI score pre-intervention was 59.1 (ranging from 22–85) points and post-intervention was 61.8 (ranging from 29–95) points. Leisure time was limited for 55.8% (n = 64) of participants, although they found joy in spending time with family: “Two days a week, they bring our granddaughter for us to take care of her; she represents a great workload because she doesn’t want to eat, she makes our day happy. I enjoy my children coming on weekends to the apartment… It gives me work, but I want it because it is an opportunity for us to be together while their father still recognizes them”, explains one of the participants.

Socio-demographic characteristics and diagnosis of persons with dementia

Persons living with dementia were predominantly female (54.5%), with a mean age of 59.6 years. Alzheimer’s disease was the most common diagnosis (61%), followed by frontotemporal dementia. Regarding Clinical Dementia Rating (CDR), 41.6% had mild dementia (CDR = 1), and 37.7% had moderate dementia (CDR = 2). At the time of diagnosis, 50.6% were actively working, while 26% were unemployed or on temporary leave.

Observation of group dynamics

The group dynamics revealed three distinct stages:

First or initial stage

Focused on understanding the disease, its symptoms, effects and impact on family life.

Second or intermediate stage

Addressed caregiving and day-to-day management, including social benefits and resources.

Third or final stage

Emphasized caregivers’ needs and challenges.

First stage

During the initial stage, participants shared experiences and sought explanations for their spouses conditions. The diagnosis of dementia was often unexpected and emotionally challenging, leading to feelings of both relief and distress. “He was an architect…, now he can’t open a can of Coke”, “He was a very good person…. He is unrecognizable”, “He has dementia a Lewy body…, I have been told that it is scarce”, explained three different relatives regarding how things had upended.

Throughout this first stage, participants sought explanations to give meaning to the question, “why him/her?”. Thus, in many cases, feelings on injust or excessive retribution appeared: “Poor thing, he does not deserve it”, and “He was always very special, cautious and quiet... He had his things”.

Diagnosis

People living with dementia experienced a prolonged journey to receive a definitive diagnosis, averaging one year and nine months. In 50.7% of cases, this process extended from two to three years, involving visits to multiple specialists who provided varying diagnoses such as depression, job stress, and anxiety before reaching a conclusive determination of dementia. “The doctor got lost with whether it was depression, anxiety… Alzheimer’s didn’t occur to him”, told an informant. “They spent four years giving him the runaround until there was a change of neurologist”, recalls another, picturing the ordeal that the person faced. “His mother and his twin brother had frontotemporal dementia. The job, the company, the crisis… He went to the psychiatrist, and he said that it was shock, stress”. The lack of precision in the diagnosis is a common feature on the process: “They said that she had depression. The T-scan was normal … at the end, she was diagnosed with semantic dementia”, said a relative. “Since his brother died, the doctors said that my husband was sad”, recollects another.

For most participants, the diagnosis of dementia came as an unexpected and distressing revelation (“I expected anything but this diagnosis. l can’t believe it”), causing feelings of anxiety and stress (“I cried all day. I wanted to think that it was stress”.) Until then, dementia had been predominantly associated by the participants with older individuals and a state of complete dependency (“His mother does not want to believe it, and she says that he is not old enough to have dementia”). However, their relatives diagnosed with dementia did not fit into these preconceived notions; the disease manifested at a life stage they considered unlikely (“I could have never imagined it … he is so young!”).

Participants expressed that the diagnosis of dementia had a destabilizing effect initially, yet paradoxically, it also facilitated a process of restructuring (“Deep down, it was a relief to get the diagnosis. I began to understand some things…”). It enabled them to reinterpret and make sense of a previously incomprehensible situation (“The diagnosis relieved me. I realized that my husband hadn’t stopped loving me”), which had felt uncontrollable (“He shouted at me, he told me that I did not do anything well… I didn’t understand why he said that, and I spent all day crying”, and “She abandoned all household chores. She did not cook, she did not iron my shirts…, she only wanted to buy and buy…, now I’m sad I have been so angry at her”). The diagnosis brought clarity to the ambiguous circumstances, providing a semblance of order amid chaos (‘It was not a life until we were told the diagnosis”). Consequently, during the sessions, participants experienced a mix of emotions stemming from this dual nature of the diagnosis.

Impact

During the initial sessions, a predominant theme was the profound impact of the disease on the personal, emotional, and socio-economic aspects of their lives. Caregivers highlighted the personal repercussions, noting the progressive loss of autonomy and heightened dependence of the person with dementia. Consequently, the spouse’s life became intricately tied to the care needs of their relative, significantly restricting their own independence. The situation impacts familiar relations (“Sometimes, I’d like a free afternoon, but what do I do with him? I don’t want to ask my kids to take care of his father), and ordinary life, as simple customs and mores became difficult ones:” We cannot go to restaurants because he gets nervous and does not want to go out to visit our friends. I had to quit going out with friends…“, or “I used to go out for dinner or go to the stadium to watch a soccer game once a week… now I can’t. She can’t stay alone”.

Emotional impact

Caregivers commonly experienced feelings of helplessness, loneliness, sadness, guilt, and other complex emotions. Dealing with the profound sense of loneliness proved especially challenging for participants. On one hand, caregivers felt a reduction in their presence and involvement in both domestic and professional spheres as their focus shifted entirely to the care of their relatives: “I must worry about work, the house, the children, him… everything. He is unaware of anything I do and does not understand that I cannot go for a walk whenever he wants. I can’t”, explained one of them.

On the other hand, family members and friends often restricted the frequency of visits or even ceased visiting the person with dementia altogether. In some cases, they tried to justify such behavior (‘I want to believe that our friends are affected by this; it is the only justification I can find for them not wanting anything to do with us anymore” or “If I go out for a walk and my daughter stays taking care of my wife, when I come back, my daughter tells me that she does not stand her mother”) but, in others, they became to think suspiciously about the true nature of the friendship (“Friends have left… In situations like these, friends disappear”, or “I feel bad they do not come (friends)…, we tried to organize dinners at home, but they did not come… And we were supposed to be friends!”).

Some participants elaborated that the relationships within the couple and family deteriorated before the diagnosis due to misinterpretation of symptoms, uncertainty, and the prolonged duration to obtain a proper diagnosis. Despite caregivers receiving care, their relationships with relatives sometimes remained strained and did not fully recover. “I was going to leave him when he was diagnosed… and look at us now. Although we all know now that he was ill, my children can’t forgive him for what he did…“, told a participant. “I separated from him because he was unbearable; he became selfish and didn’t care about anything. Now I know that he was already ill”, explained another.

The sense of loss associated with the marital relationship is emphasized. A shift occurs within the couple, leading to reduced intimacy and diminished emotional closeness with the ill partner: “My husband is a big child now. I could not have sex with him now”; “I feel I’ve lost my partner, and I have another child. I have adopted an old child”, and “The couple’s relationship is lost and turns into affection and devotion”.

Socio-economic impact

Participants and their partners affected by early-onset dementia constitute a segment of the economically active population. Upon diagnosis, individuals with dementia often must resign from their jobs. Additionally, in 16.9% of cases, the caregiving partner also leaves their employment. Financial difficulties ensue for both individuals with dementia and their partners, as nearly all of them have financial commitments such as mortgages and loans, along with responsibilities to children: “He was fired because he made many mistakes. I cannot quit my job, he isn’t entitled to a pension, and we are still paying for the apartment”, and “I’ve had to go back to work because we don’t know what he did with the money; what’s more, he hasn’t paid his self-employed contributions for the last few years, so now he is not entitled to a pension”.

In some instances, the disease necessitates an unforeseen reorganization of roles within the family, especially regarding financial issues: “I’ve had to learn how to run the business… I would never have imagined that happening”; “I’ve had to move to a smaller apartment, and my son has had to change schools … I don’t know what he did with the money… I am doing paperwork to apply for a pension”, and “He always managed the household bills; I didn’t know anything…, and now I do everything”.

Second stage

Order

In the second stage, participants focused on the disease’s progression and prognosis, aiming to understand what to anticipate. They attempted to organize their experience with dementia chronologically, using knowledge of its stages to predict symptoms and their impact, assuming that each stage would lead to further deterioration. While they segmented dementia into phases, they did not rely on biomedical stages for understanding. Instead, they employed descriptive phases that centered on the functional changes in their family members (“He’s already past the money stage. He is now obsessed with eating. He is at that stage where I’m the baddie”), influencing family dynamics: “She has reached the stage in which I cannot leave her alone”.

Furthermore, segmenting the experience into stages enabled participants to rationalize and justify the required care and resources: “They [the professionals] will tell me when it’s time to admit him to a nursing home”, or “He is still in a stage in which he does not need to stay all day in the center”.

The needs of both the person with dementia and their family evolve with the progression of the disease. These needs shift as cognitive decline advances (“She still has memory, but she is losing it very fast… in one month, she stopped cooking and cleaning… I don’t know what I will do”) and additional dependencies emerge (“She can’t use public transport. I thought that would come later…”). This adaptation of needs represents a significant challenge for participants, reflecting the dynamic nature of the disease: “He is going fast… I have just fixed one problem, and suddenly we are in another stage”; “He suddenly worsened… He could no longer be alone… Luckily, my daughters were on holiday, and they took care of him until I found someone”.

Problem-solving

During these sessions, participants exchanged practical advice on addressing daily challenges. Tips ranged from a wide variety of practical topics, from where to purchase lights for improved nighttime orientation, to strategies for encouraging showers (“My husband knows if he doesn’t shower, then he gets no cigarettes”), relaxing anxiety (‘When she asks you for money, tell her the bank is closed and that you will give it to her tomorrow”), facilitating shopping trips, or taking advantage of public aid (“He is entitled to a disability pension… Fill in the application to have the transport included”).

Third stage

Needs

The final stage primarily focused on the caregivers’ needs. They highlighted the importance of balancing their caregiving role with other responsibilities they had acquired and insist on the difficulties to achieve such balance: “I need to sleep, but he doesn’t let me. He gets up every 2 hours. If I don’t sleep, I can’t work”. Mild or explicit complains about the unbearability of the situation are quite common, as well as regrets: “We cannot go out for dinner with friends anymore, because if it is a buffet, he eats everything…; I cannot go to the cinema… I am in jail”; “I’m 51, and I’ve had no life in the last two years ago when he got ill. He’s nothing like the man I married, and I can’t rebuild my life”, or “There are many things I cannot stand…. Well, I do because I have no choice.

I had to hire a nanny in the mornings because –if not– I was always late to work”.

Help

During this stage, participants expressed dissatisfaction with the limited support they received. They mentioned that they lacked support from their relatives and were hesitant to ask for assistance (“They should realize that I have the right to take a weekend off for myself. I had to tell the children that it wasn’t me they were helping, but their father, who is an ill person”). Some refrained from seeking help to avoid inconveniencing their relatives (“I don’t want to involve my children; they already have lives… This is my concern”), while others believed that their relatives should help without being asked (“I want his family (parents and siblings) to be less distant; sometimes it feels like I am asking for charity…; they should volunteer”).

Experience evaluation

Although Zarit scale scores did not show statistically significant differences post-intervention (p = .166) (Insert Figure 1) linear regression analysis (∆Zarit) indicated improvements in both intense (p = 3.44 × 10-07) and mild (p = .0489) baseline ZBI caregivers’ groups. We also found a trend in the same direction for those caregivers in which the people with dementia have high GDS (p = .0695), suggesting a greater score in ZBI in the advanced stages of the disease (Table 3).

Table 3.

Linear regression model for ∆Zarit. ZBI: Zarit burden interview.

	Estimate	Standard error	p-value
Intercept	11.8555	25.2190	0.6399
Baseline ZBI (intense)	−25.1153	4.4156	3.44e-07*
Baseline ZBI (mild)	−10.0804	5.0216	0.0489*
People with dementia patient gender (male)	−3.7209	3.4746	0.2882
People with dementia age	0.2066	0.3702	0.5787
Dementia status (nonAD)	−1.4646	3.4872	0.6759
GDS (moderate)	4.8069	4.3628	0.2747
GDS (severe)	12.0468	6.5260	0.0695
MMSE	0.2460	0.2607	0.3489
Caregiver gender (male)	−4.0799	4.0370	0.3160
Caregiver age	−0.1175	0.2687	0.6633
Caregiver employment activity (left to care)	−4.9527	4.8152	0.3076
Caregiver employment activity (active)	1.8669	4.1652	0.6555

*Significant p-value <.05.

Additionally, 71% of participants completed the group sessions with 93.5% expressing a desire to continue. On many occasions, the participants asked if they could invite other spouses or caregivers to the sessions, but since the groups were closed, this was not authorized.

When answering open questions in the evaluation of the intervention, the participants expressed that groups are essential to continue “caring”, “enriching”, “educative” and that they are “necessary”: “It is the only place where I can talk; people don’t understand this”, and “I attend all these meetings. I’m waiting for days to pass until the next meeting”.

Moreover, a mutual support network emerged from this experience in 2013, further highlighting the positive impact of the support groups. Additionally, participants believed that the support groups provided valuable aid by fostering identification with other participants, enhancing understanding of the disease and their situation, facilitating the sharing of experiences, learning opportunities to improve care, offering both receiving and providing support, providing training and information, and alleviating their burdens.

Discussion

In this study, we have explored the dynamics and experience of socioeducational and sociotherapeutic groups aimed at spouses of person with young onset dementia and their effect on reducing caregiver burden. Although the overall caregiver burden quantified by the ZBI did not significantly decrease after the group experience, it is possible that caregivers with the highest burden at baseline may have benefited, and several qualitative measures indicated that the experience was positive and helpful for the participants.

Our findings align with other studies indicating that quantitative assessments, such as the ZBI, did not demonstrate a significant reduction in caregiver burden following group interventions (Benet et al., 2022; Dam et al., 2016; Ortiz-Mallasén et al., 2021). Results from various programs generally show modest effects, with reductions in caregiver burden often not reaching statistical significance.

The results of our study on support groups for individuals with early-onset dementia indicate that this intervention may be particularly beneficial for caregivers experiencing high baseline burden, a finding not previously identified. Additionally, qualitative measures revealed positive perceptions of the support group’s benefits.

Participants attributed the success of the support group experience to gaining a better understanding of the disease and learning new caregiving strategies. Similar to findings in other studies (West & Hogan, 2019), participants reported receiving minimal informal support from their natural networks and feeling a lack of someone to confide in. However, they noted that the support group experience provided an outlet for their feelings of loneliness through listening, emotional support, and connecting with fellow participants. Consistent with this, a study by Ortiz-Mallasén et al. (2021) found no significant improvement in ZBI scores following the intervention, similar to our study, but did detect a positive change in perceived social support measured using the Duke-UNK scale.

The distribution of dementia diagnoses among the relatives of the participants alignes withis similar than data published on the general prevalence of early-onset dementia (Esteban de Antonio et al., 2021; McMurtray et al., 2006; Rossor et al., 2010). The characteristics and needs of the participants in the group also correspond with previous published studies (Bannon et al., 2022; Evans & Lee, 2014; Hutchinson et al., 2016; Millenaar et al., 2016; Svanberg et al., 2011). These spouses included in the study encounter similar challenges as relatives of people with late-onset dementia. However, they have additional requirements stemming from their social situation- such as being active workers at the time of the diagnosis, having dependent children, facing financial obligations, and experiencing feelings of loneliness. Additionally, they face challenges specific to the disease itself, including rarer forms of dementia, faster cognitive decline, a prolonged period until receiving a definitive diagnosis, and a more aggressive onset. These distinct characteristics and needs underscore the necessity for social care tailored specifically to the unique circumstances of families of people with dementia (Gibson et al., 2014; Grunberg et al., 2022; Hutchinson et al., 2016; Johannessen et al., 2017; Johannessen & Möller, 2013; Kimura et al., 2015).

Our initiative has demonstrated that targeted support groups for spouses of individuals with early-onset dementia serve as an innovative and effective intervention to complement individualized support and natural networking, which are significantly diminished upon the onset of the disease. Additionally, our experience with these support groups has revealed consistent and recurrent dynamics, unfolding in distinct phases. Specifically, we identified and described three stages in the group’s dynamics: an initial stage focused on understanding the disease, its symptoms, and its impact; a second stage centered around resolving day-to-day challenges; and a final stage addressing the spouses’ own needs.

Similarly, our findings suggest that certain caregiver subgroups, particularly those with high initial burden as assessed by the ZBI at the beginning of the group project, benefited more significantly from the support groups. Future research should focus on these subgroups to better understand the dynamics and specific mechanisms contributing to the reduction of caregiving impact and burden.

Furthermore, the results of our study revealed that qualitative measures identified significant benefits not captured by quantitative tools. Therefore, we recommend for future research the design and implementation of a robust combination of quantitative and qualitative methodologies for a more comprehensive understanding of the intervention’s impact.

Strengths and limitations

The study introduces innovative support groups tailored specifically for spouses of individuals with young onset dementia, addressing a critical gap in existing literature and offering a novel approach to caregiver support. By employing a combination of quantitative and qualitative methodologies, the research provides a comprehensive understanding of the impact of support groups on caregiver burden, allowing for a nuanced analysis of both quantitative outcomes and qualitative experiences.

The identification of specific subgroups of caregivers, particularly those with high initial burden, who may benefit significantly from participation in support groups, adds depth to the findings and contributes to a more tailored and effective approach to caregiver support. Furthermore, the delineation of three distinct stages in the dynamics of support group sessions offers valuable insights for designing future interventions that better cater to participants’ evolving needs and expectations.

However, the qualitative findings are limited to the cultural context of Catalonia, potentially restricting the generalizability of results to other cultural settings. Methodological constraints, such as sample size and scope, may limit the depth of analysis and generalizability of findings. While the study indicates that quantitative measures of caregiver burden did not exhibit significant reductions post-intervention, there is a need for further research to explore long-term effects and sustainability, as well as to incorporate a broader range of outcome measures to capture the multifaceted impact of support interventions.

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Conclusion

Further studies are imperative to refine group techniques aimed at providing accurate information and robust support to caregivers of individuals with progressive degenerative diseases, thereby significantly enhancing the quality of life for both the caregiver and the affected individual. Additionally, urgent attention is required for the development of improved quantitative techniques for assessing caregiver burden, ensuring a comprehensive understanding of the complexities of caregiving experiences. Our forthcoming efforts will be dedicated to strengthening specific support groups tailored to families of individuals with early-onset dementia, encompassing spouses and children. We aim to rigorously investigate factors directly associated with the effectiveness of these initiatives and to adapt interventions accordingly, with a resolute focus on enhancing the well-being of family caregivers.

Footnotes

Author contributions

All the authors made substantial contributions to the conception and design of the work and has approved the submitted version.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research was carried out with Ace Alzheimer Center Barcelonás own funds.

Ethical statement

ORCID iDs

Pilar Cañabate

Itziar de Rojas

Guitart Marina

Mariola Moreno

Silvia Preckler

Susanna Seguer

Gabriel Martínez

America Morera

Maitee Rosende-Roca

Franco Emanuel Appiani

Juan Pablo Tartari

Liliana Vargas

Mario Ricciardi

Diana Maria Ariton Smera

Gemma Ortega

Angela Sanabria

Ana Espinosa

Alba Pérez-Cordón

Sergi Valero

Montserrat Alegret

Anna Riera

Agustín Ruiz

Miren Jone Gurrutxaga

Marta Marquié

Yahveth Cantero-Fortiz

Mercè Boada

Pilar Cañabate is currently head of the Social Work Unit at ACE Alzheimer Center Barcelona. She has a PhD in Social and Cultural Anthropology from the University of Barcelona and a Master in Bioethics and Law from the same University. She is a professor in the department of Anthropology at the University of Barcelona. Since 1998 she has been part of the diagnostic team of ACE Memory Clinic and accompanies families throughout the disease, offering support and strategies so that they can deal with the situation with competence. Cañabate regularly collaborates with local and regional governments as an expert, advising them in the design of social and health policies.

de Rojas, Itziar, MSc, PhD, Geneticist PhD since 2019 she is a researcher in the Ace Alzheimer Center Barcelona. She has wide experience in research on neurodegenerative diseases, especially Alzheimer’s disease. His main lines of research focus on the identification of new genetic risk factors of dementia by genome wide association studies in different phenotypes and endophenotypes. As a bioinformatician, she has also contributed to many publications on cognitive decline and even healthy cohort studies managing databases and performing statistical analyses.

Marina Guitart is a psychologist and coordinator of one of the cognitive rehabilitation centers at ACE Alzheimer Center. She is responsible for the care of users and the follow-up of families. Since 2010, she has directly participated in the socio-therapeutic group care program for families of people with early-onset dementia at the entity, collaborating in the design of the sessions and in their conduction.

Mariola Moreno is a social worker at ACE Alzheimer Center. She is part of the multidisciplinary team in the memory clinic, focusing on contributing social data for diagnoses, creating interdisciplinary intervention plans, and providing support to families and caregivers throughout the disease process. This includes offering information, emotional assistance, and aiding families in managing changes that arise in the lives of individuals with dementia.

Silvia Preckler is a social worker at ACE Alzheimer Center. She is part of the multidisciplinary team in the memory clinic, focusing on contributing social data for diagnoses, creating interdisciplinary intervention plans, and providing support to families and caregivers throughout the disease process. This includes offering information, emotional assistance, and aiding families in managing changes that arise in the lives of individuals with dementia.

Susanna Seguer is a social worker at ACE Alzheimer Center. She is part of the multidisciplinary team in the memory clinic, focusing on contributing social data for diagnoses, creating interdisciplinary intervention plans, and providing support to families and caregivers throughout the disease process. This includes offering information, emotional assistance, and aiding families in managing changes that arise in the lives of individuals with dementia.

Gabriel Martínez, a geriatrician and co-director of the Geriatrics Unit at the Digital Hospital of the Ministry of Health of Chile, is a graduate of the Pontifical Catholic University of Chile and holds a Master’s degree in Geriatrics from the University of Chile. With over two decades of experience in elder care, he specializes in the diagnosis and treatment of chronic diseases, frailty, falls, and dementia. From 2015 to 2017, he engaged in various research collaborations at the ACE Alzheimer Center Barcelona.

America Morera is a pedagogue and deputy director of the cognitive rehabilitation centers at ACE Alzheimer Center Barcelona. She is an expert in the development of cognitive rehabilitation programs that help people with dementia maintain their autonomy and quality of life. She is responsible for the design of cognitive stimulation programs and has provided specialized care to people with early-onset dementia since 2006.

Maitee Rosende-Roca is a neurologist and is part of the multidisciplinary diagnostic team at the Memory Clinic of the ACE Alzheimer Center Barcelona. Her research focuses on developing innovative techniques for early dementia diagnosis, exploring new therapeutic approaches, and enhancing the prognosis of this condition. Additionally, she has experience in various clinical trials related to mild cognitive impairment and dementia.

Franco Emanuel Appiani, a neurologist and professor at the International University of Catalonia, is a member of the multidisciplinary diagnostic team at the Memory Clinic of the ACE Alzheimer Center Barcelona. His research focuses on developing innovative techniques for early dementia diagnosis, exploring new therapeutic approaches, and enhancing the prognosis of this condition. Additionally, he has experience in various clinical trials related to mild cognitive impairment and dementia.

Juan Pablo Tartari is a neurologist and is part of the multidisciplinary diagnostic team at the Memory Clinic of the ACE Alzheimer Center Barcelona. His research focuses on developing innovative techniques for early dementia diagnosis, exploring new therapeutic approaches, and enhancing the prognosis of this condition. Furthermore, he possesses diverse experience in clinical trials related to mild cognitive impairment and dementia, including both Alzheimer’s disease and observational research projects focused on subjective cognitive decline and preclinical Alzheimer’s disease.

Liliana Vargas is a geriatrician specialized in dementias and is part of the multidisciplinary diagnostic team at the Memory Clinic of the ACE Alzheimer Center Barcelona. Her research focus is directed towards developing innovative techniques for early dementia diagnosis, exploring new therapeutic approaches, and enhancing the prognosis of this condition. Simultaneously, she holds the role of clinical lead for the cognitive rehabilitation centers within the organization. Furthermore, she has experience in various clinical trials related to mild cognitive impairment and dementia across all its stages.

Mario Ricciardi is a neurologist and is part of the multidisciplinary diagnostic team at the Memory Clinic of the ACE Alzheimer Center Barcelona. His research focuses on developing innovative techniques for early dementia diagnosis, exploring new therapeutic approaches, and enhancing the prognosis of this condition. Additionally, he has experience in various clinical trials related to mild cognitive impairment and dementia.

Diana Ariton is a neurologist and is part of the multidisciplinary diagnostic team at the Memory Clinic of the ACE Alzheimer Center Barcelona. His research focuses on developing innovative techniques for early dementia diagnosis, exploring new therapeutic approaches, and enhancing the prognosis of this condition. Furthermore, he possesses diverse experience in clinical trials related to mild cognitive impairment and dementia, including both Alzheimer’s disease and observational research projects focused on subjective cognitive decline and preclinical Alzheimer’s disease.

Dr. Gemma Ortega is a part of the multidisciplinary team at the Memory Clinic in the ACE Alzheimer Center Barcelona, serving as a neuropsychologist. Her clinical focus centers on conducting neuropsychological assessments for the evaluation, diagnosis, and treatment of neuropsychological conditions. She also plays a crucial role in composing neuropsychological reports related to clinical practice, including initial assessments and follow-ups.

Dr. Angela Sanabria is a part of the multidisciplinary team at the Memory Clinic in the ACE Alzheimer Center Barcelona, serving as a neuropsychologist. Her clinical focus centers on conducting neuropsychological assessments for the evaluation, diagnosis, and treatment of neuropsychological conditions. She also plays a crucial role in composing neuropsychological reports related to clinical practice, including initial assessments and follow-ups.

Dr. Anna Espinosa is a part of the multidisciplinary team at the Memory Clinic in the ACE Alzheimer Center Barcelona, serving as a neuropsychologist. Her clinical focus centers on conducting neuropsychological assessments for the evaluation, diagnosis, and treatment of neuropsychological conditions. She also plays a crucial role in composing neuropsychological reports related to clinical practice, including initial assessments and follow-ups.

Alba Perez-Cordon is a part of the multidisciplinary team at the Memory Clinic in the ACE Alzheimer Center Barcelona, serving as a neuropsychologist. Her clinical focus centers on conducting neuropsychological assessments for the evaluation, diagnosis, and treatment of neuropsychological conditions. She also plays a crucial role in composing neuropsychological reports related to clinical practice, including initial assessments and follow-ups.

Natalia Muñoz is a part of the multidisciplinary team at the Memory Clinic in the ACE Alzheimer Center Barcelona, serving as a neuropsychologist. Her clinical focus centers on conducting neuropsychological assessments for the evaluation, diagnosis, and treatment of neuropsychological conditions. She also plays a crucial role in composing neuropsychological reports related to clinical practice, including initial assessments and follow-ups.

Nuria Lleonat is a part of the multidisciplinary team at the Memory Clinic in the ACE Alzheimer Center Barcelona, serving as a neuropsychologist. Her clinical focus centers on conducting neuropsychological assessments for the evaluation, diagnosis, and treatment of neuropsychological conditions. She also plays a crucial role in composing neuropsychological reports related to clinical practice, including initial assessments and follow-ups.

Sergi Valero is a Doctor of Psychology from the Universitat Autònoma de Barcelona. He is the Chief of the Department of Medical Psychology at Ace Alzheimer Center Barcelona since January 2018. In addition to his role, he has contributed significantly to publications on cognitive decline and healthy cohort studies as a bioinformatician. His contributions include managing databases and conducting statistical analyses.

Dr. Montse Alegret is a neuropsychologist and holds a PhD in Psychology from the University of Barcelona. She is currently the Chief of the Clinical Neuropsychology Unit of Ace Alzheimer Center Barcelona, carrying out clinical and research tasks. She is also a member of the research team for national (FACEHBI) and international (MOPEAD) projects on early detection of Alzheimer’s disease and other dementias.

Dr. Vanessa Pytel is a neurologist and the director of the Memory Clinic team at ACE Alzheimer Center. She possesses extensive experience in diagnosing and treating dementia, specializing in the utilization of transcranial magnetic stimulation for its treatment. Her research is centered on advancing innovative techniques for early dementia diagnosis, exploring novel therapeutic approaches, and improving the prognosis of this condition. Moreover, she has participated in various clinical trials related to mild cognitive impairment and dementia.

Agustín Ruiz Laza holds the position of Scientific Director at the ACE Alzheimer Center Barcelona, a nonprofit organization dedicated to Alzheimer’s research. His research is focused on identifying new genes and mechanisms involved in Alzheimer’s development. The primary goal of his genomic research team is to understand the causes of Alzheimer’s disease and other dementias through the integration of genetic, transcriptomic, and proteomic data. Additionally, he has developed novel diagnostic and treatment strategies for this condition.

Anna Riera holds a degree in Medicine from UAB as well as a MBA from ESADE Business School and an Executive Master in Public Administration EMPA. Anna Riera is currently working at ACE, Alzheimer Center Barcelona as Deputy General Manager. She is an expert and has a comprehensive knowledge of healthcare systems field including organization model, healthcare delivery services funding and payment, quality models and innovation. She also works actively, along with providers, to improve public service systems.

Miren Jone Gurrutxaga, with 22 years of experience at ACE Alzheimer Center Barcelona, currently serves as its General Director. She has held various responsibilities throughout her tenure with the organization, including notable roles as Director of Economic Management and Human Resources. She holds an Economics and Business Sciences degree, supported by a Master’s in Tax Advisory. In her capacity as General Director, Gurrutxaga assumes the responsibility of overseeing and optimizing the organization’s operations. Her leadership also extends to ensuring the fulfillment of ACE Alzheimer Center Barcelona’s mission, which focuses on promoting excellence in clinical and research management within the organization.

Luis Tarraga, a clinical psychologist, established Spain’s first therapeutic day center for dementia in 1991, the Alzheimer Centre Educacional. Here, he initiated the Comprehensive Psycho-Stimulation Program. In 1995, he founded the ACE Alzheimer Center Barcelona, specializing in diagnosing cognitive and behavioral disorders. In 2006, he inaugurated the Day Hospital, targeting neurodegenerative diseases in those under 65.

Marta Marquié, MD, PhD, Deputy Director of Clinical Research at Ace Alzheimer Center Barcelona (September 2017 to present). A specialized neurologist in cognitive disorders with extensive clinical and research experience in both Spain and the United States. She is part of the multidisciplinary diagnostic team at the Memory Clinic of the ACE Alzheimer Center Barcelona. Her research focuses on developing innovative techniques for early dementia diagnosis, exploring new therapeutic approaches, and enhancing the prognosis of this condition. Previously, she was a Research Fellow at Mass General Hospital Institute for Neurodegenerative Disease in Boston.

Yahveth Cantero is a dedicated medical researcher and clinician with a passion for advancing neurodegenerative disease studies. With an MSc in Clinical Research and a background in hematological and neuroscientific research, Yahveth has contributed to numerous clinical trials and studies. Their expertise lies in Alzheimer’s disease and transfusion medicine. Yahveth’s commitment to innovative healthcare solutions drives their pursuit of knowledge and meaningful impact in the field

Dr. Mercè Boada is a neurologist and Doctor of Medicine. She is a co-founder and serves as the Chief Medical Officer of Ace Alzheimer Center Barcelona, as well as being the chief of the dementia area at the Vall d’Hebron Research Institute. Her engagement in the domain of cognitive and behavioral disorders, along with her involvement in healthcare resource and service planning for dementia patients in Catalonia, commenced in 1986. Her healthcare and social endeavors have played a crucial role in establishing and disseminating specialized centers in Catalonia, catering to comprehensive diagnosis and the provision of care for dementia patients.

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