CoChat
Sign Up
Cited by 129Dementia and Cognitive Impairment ResearchNursing care and researchFamily Caregiving in Mental Illness

The Unique Experience of Spouses in Early-Onset Dementia

Open access
Ducharme, Francine, Kergoat, Marie-Jeanne, Antoine, Pascal, Pasquier, Florence, Coulombe, Renée·2013·American Journal of Alzheimer's Disease & Other Dementias®
DOI 10.1177/1533317513494443PMC PMC10852552
Open this paper in CoChat — free accountOpen PDF

Abstract

To date, few studies have examined the experience of spouse caregivers living with a person with early-onset dementia. Moreover, few support resources are offered to these family caregivers and fewer are still tailored to their unique trajectory. The aim of this qualitative study was to document the lived experience of spouse caregivers of young patients in order to inform the development of professional support tailored to their reality. A sample of 12 spouses of persons diagnosed with dementia before the age of 65 participated in semistructured interviews. Six themes emerged from their caregiver trajectories, namely, difficulty managing behavioral and psychological symptoms, long quest for diagnosis, nondisclosure to others and denial of diagnosis, grief for loss of spouse and midlife projects, difficulty juggling unexpected role and daily life responsibilities, and difficulty planning for future. Results open up innovative avenues for the development of interventions geared to facilitating role transition for these spouse caregivers.

AI snapshot

Written from the paper’s full text.

TL;DR

This qualitative study explored the lived experience of spouses caring for partners diagnosed with dementia before age 65. It identified six recurring themes across their caregiving trajectory and argued for support tailored to their role transition, stigma, grief, and future uncertainty.

Key findings

  • Twelve spouse caregivers participated: 8 women and 4 men, mean age 55 years (SD 6.9), with an average of 16 years of schooling (SD 3.6). Their partners’ diagnoses had been disclosed about 4 years earlier on average; 9 of 12 had Alzheimer-type dementia, and the remaining 3 had Pick’s disease or mixed dementia.
  • Participants had been providing care for an average of 6.5 years (SD 1.8) and reported giving about 102 hours per week of support, help, and care (SD 57.7). One-third had children still living at home, and 58.3% received services such as housework, personal/nursing care, or respite.
  • Six themes recurred: managing the partner’s behavioral and psychological symptoms; a lengthy search for a diagnosis; withholding the diagnosis from others and denial; grieving the loss of the spouse, marriage, and midlife plans; juggling an unexpected caregiving role with daily responsibilities; and difficulty planning for the future.
  • No differences were found between male and female spouse caregivers in the themes that emerged.

Methods

  • A qualitative, phenomenological design was used. Participants were spouses who identified as primary caregivers of someone diagnosed with Alzheimer’s disease or a related disorder before age 65, recruited sequentially through memory clinics in the integrated university health network of the Université de Montréal.
  • Semistructured interviews, averaging 90 minutes, covered the couple’s trajectory from first symptoms through diagnosis, difficulties, and changes in dyadic and family relationships. Data collection and analysis occurred simultaneously, and saturation was reached after the 12th interview.
  • Interviews were transcribed verbatim and analyzed by two researchers using thematic content analysis with QDA Miner 4.0. An initial coding scheme was validated by consensus, and interrater agreement reached 98%.

Limitations

  • The paper does not include a dedicated limitations section.
  • Evident from the text: the sample was small (12 spouses), drawn from a single regional clinical network, and predominantly composed of Alzheimer-type cases, which limits transferability and subgroup comparison.
  • Evident from the text: the design was cross-sectional and retrospective, relying on spouse accounts after diagnosis, so it cannot establish causal or longitudinal patterns; the absence of male–female differences may also reflect limited statistical power in a qualitative sample.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.1177/1533317513494443

Cites

32 of 32 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 31 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    The care recipient's inability to continue work-related activities was the most attention-drawing issue at first.

    “The cared-for person's inability to pursue work-related activities was what drew the most attention initially.”
    Quote in the paperNot a substantial claim
  • Findingown data

    Spouse caregivers had trouble balancing an unexpected role with daily life responsibilities.

    “Data analyses showed that the spouses' experience across their trajectory revolved essentially around 6 recurring themes: difficulty managing behavioral and psychological symptoms of life partner; long quest for diagnosis; nondisclosure to others and denial of diagnosis; grief for loss of spouse, married life, and midlife projects; difficulty juggling unexpected role and daily life responsibiliti”
    Quote in the paperSubstantial claim
  • Findingown data

    Spouse caregivers had difficulty planning for the future.

    “Data analyses showed that the spouses' experience across their trajectory revolved essentially around 6 recurring themes: difficulty managing behavioral and psychological symptoms of life partner; long quest for diagnosis; nondisclosure to others and denial of diagnosis; grief for loss of spouse, married life, and midlife projects; difficulty juggling unexpected role and daily life responsibiliti”
    Quote in the paperNot a substantial claim
  • Findingown data

    Spouse caregivers went through a long search for a diagnosis.

    “Data analyses showed that the spouses' experience across their trajectory revolved essentially around 6 recurring themes: difficulty managing behavioral and psychological symptoms of life partner; long quest for diagnosis; nondisclosure to others and denial of diagnosis; grief for loss of spouse, married life, and midlife projects; difficulty juggling unexpected role and daily life responsibiliti”
    Quote in the paperNot a substantial claim
  • Findingown data

    Complicity and intellectual and reciprocal exchanges gradually disappeared.

    “Complicity and intellectual and reciprocal exchanges disappeared gradually.”
    Quote in the paperSubstantial claim
  • May combine two claims. 29
  • Classified as probably not a substantial claim. 19
  • The quote only partly states this claim. 2

  • May combine two claims.

    Findingown data

    Most caregivers searched the Internet before and after diagnosis, and several said the diagnosis confirmed what they had found online.

    “Most of the caregivers thus searched the Internet before and after the diagnosis and several point out that the diagnosis confirmed what they had been able to find out on their own from the Web.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Spouses faced the harsh reality ahead but also tried to understand the disease's nature, prognosis, likely course, treatments, duration, expected care, and needed changes to home and family life.

    “In short, marital partners apprehended the harsh reality that awaited them but also sought to understand the nature of the disease, its prognosis, its likely course, its possible treatments, its duration, the care to expect, and the changes to make to one's home and family life.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The diagnosis often brought uncertainty but also relief because it explained long-standing peculiar behaviors.

    “The diagnosis was often a source of uncertainty but also often one of the relief, as it explained the peculiar behaviors that had been exhibited for years.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Caregivers realized they had to grieve many losses: the pre-disease relationship with their spouse, their spouse role replaced by caregiver role, and a normal life.

    “In sum, caregivers realized that they needed to grieve the loss of numerous things, the relationship with their spouse that existed prior to the disease, their spouse role in exchange for their caregiver role, and a ''normal'' life.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Spouse caregivers concealed the diagnosis from others and denied it.

    “Data analyses showed that the spouses' experience across their trajectory revolved essentially around 6 recurring themes: difficulty managing behavioral and psychological symptoms of life partner; long quest for diagnosis; nondisclosure to others and denial of diagnosis; grief for loss of spouse, married life, and midlife projects; difficulty juggling unexpected role and daily life responsibiliti”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    When children, family, and friends were finally told after unmaskable symptoms appeared, spouses felt embarrassment and wanted to avoid social situations.

    “In addition, when children, family, and friends were finally informed of the diagnosis following the onset of symptoms impossible to mask, the spouses felt a sense of embarrassment and the desire to avoid social situations”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Spouse caregivers grieved the loss of their spouse, their married life, and their midlife plans.

    “Data analyses showed that the spouses' experience across their trajectory revolved essentially around 6 recurring themes: difficulty managing behavioral and psychological symptoms of life partner; long quest for diagnosis; nondisclosure to others and denial of diagnosis; grief for loss of spouse, married life, and midlife projects; difficulty juggling unexpected role and daily life responsibiliti”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    In contrast to late-onset dementia, memory loss was not the initial warning sign for spouses; behavioral problems and personality changes were.

    “Unlike with persons affected by the disease at an advanced age, memory loss was not what alerted the spouses.The alarm was sounded instead by behavioral problems and changes in personality”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    In early stages, frequent job mistakes led colleagues and superiors to offer leave, rest, or changed duties and to blame burnout without considering dementia.

    “In the early stages, frequent mistakes on the job prompted colleagues and superiors to offer leave, rest or a change of duties, laying the blame on burnout without considering the possibility of dementia even remotely”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Diagnosis disclosure often triggered grief over losing the spouse, married life, and life projects, felt like an official verdict.

    “Diagnostic disclosure often marked the moment when grief for loss of spouse, of one's married life, and of life projects struck the consciousness of the caregivers as though a verdict had been officially laid down”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Findingnone given

    For caregivers, talking and sharing with their life partner used to be the most natural of occurrences.

    “For caregivers, talking and sharing with their life partner used to be the most natural of occurrences.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingreasoning

    Spouses, still young, are often in the labor market at the time of diagnostic disclosure and are deeply concerned about having to give up their worker role in order to assume the caregiver role full time.

    “Their spouses, who are still young, are often in the labor market at the time of diagnostic disclosure and are deeply concerned by the fact of having to give up their worker role in order to assume a caregiver role full time.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Young spouse caregivers, with many years ahead of them, expected an uncertain future and experienced feelings of helplessness.

    “Still young, the spouse caregivers had many years ahead of them and expected an uncertain future while experiencing feelings of helplessness.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Spouses of persons with early-onset dementia had not been prepared for the caregiver role, which took up more and more of their lives and affected their other roles and daily responsibilities as parent, as child of an aging parent, and as worker.

    “Not only did this grieving cause suffering, but the caregiver role occupied more and more space in the life of the spouses who had not been prepared for it.This affected the spouses' other roles and responsibilities of daily life, that is, those of parent, child of an aging parent, and worker”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Few resources were available to help spousal dyads cope with the difficulties undermining daily life, and spouses cited limited availability and accessibility and a lack of flexibility and continuity in the home care, psychological support, and respite services they needed.

    “There were few resources available to help the spousal dyads deal with all these difficulties undermining daily life.Limited availability and accessibility and lack of flexibility and continuity were the faults cited by the spouses in reference to the home care, psychological support, and respite services that they needed”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The quest for a diagnosis or for the cause of perceived changes, management of the spouse's problem behaviors, preparation for the caregiver role, and adjustments to marital and family life are elements that heavily affect the spouse caregivers' trajectory.

    “Our results underline that the quest for a diagnosis or for the cause of the changes perceived and experienced, management of the spouse's ''problem'' behaviors, preparation for the caregiver role, and adjustments to marital and family life are elements that have a heavy impact on the spouse caregivers' trajectory.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim.

    Findingown data

    The study's results underscore that other support measures would be more specific for spouse caregivers of persons with early-onset dementia, particularly regarding role identity and the change in intergenerational ties owing to the frequent presence of children still at home.

    “The results of our study underscore that other measures of support would be more specific for spouse caregivers of persons with earlyonset dementia, particularly with regard to the role identity and to the change in intergenerational ties owing to the frequent presence of children still at home.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    Interviews were conducted by interviewers trained in qualitative interviewing and with mental health expertise.

    “Interviews lasted 90 minutes on average and were carried out by interviewers with expertise in mental health and trained in conducting qualitative interviews.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. The quote only partly states this claim.

    Study design and conductown data

    Two research team members with qualitative analysis expertise independently read the first five interview transcripts.

    “These researchers read the transcripts of the first 5 interviews independent of one another.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    The project received ethics approval from the recruitment sites' review boards.

    “The project was approved by the ethics review boards of the various recruitment sites.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Study design and conductown data

    The initial coding scheme was validated by consensus among raters and then used in thematic content analysis.

    “This initial coding scheme was subjected to interrater validation by consensus and was later used in the thematic content analysis of the data collected thereafter.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    Early-onset dementia differs from late-onset dementia in broader expression, pervasiveness of certain cognitive symptoms, severity of neuropsychiatric signs, and changes in character and behavior.

    “What differentiates early-onset forms of the disease from late-onset forms are a broader spectrum of expression, pervasiveness of certain cognitive symptoms, severity of neuropsychiatric signs, and changes in character and behavior.10”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [10] 10. Mendez M. The accurate diagnosis of early-onset dementia. Int J Psychiatry Med. 2006;36(4):401-412. source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Studies of early-onset dementias are scarce, and studies of their family caregivers, mainly spouses, are even rarer.

    “Given that dementia continues to be closely associated with aging, studies of early-onset dementias remain relatively scarce, and those investigating the experience of family caregivers of persons with such dementias, primarily their spouses, are even rarer.9”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [9] 9. Roach P, Keady J, Bee P, Hope K. Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice. Rev Clin Gerontol. 2008;18(2):165-174. source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    Prior literature has documented stress, burden, fatigue, immune suppression, psychological distress, psychotropic drug use, depression, and mortality among family caregivers of older people with dementia.

    “Perceived stress and burden, chronic fatigue, lowered immune system, psychological distress, psychotropic drug use, depression, and even mortality have been amply documented in the literature, [1][2][3][4]”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [1][2][3][4]

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductown data

    Interrater validation of coding reached 98% agreement.

    “This interrater validation of the coding process achieved 98% agreement.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationown data

    The couple's isolation partly came from reluctance to seek help from a social network seen as unable to understand early-onset dementia, and from fear of stigma and bias.

    “The isolation of the couple sprang in part from a reluctance to seek help from a social network deemed unable to comprehend the reality of the disease at such a young age as well as from the fear of stigma and bias”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductcitation

    Data collection and analysis occurred at the same time, and participant number was set by data saturation regarding life experience.

    “In accordance with standard practice for qualitative studies, data collection and data analysis were performed simultaneously, and the number of participants was determined by the achievement of data saturation regarding life experience, that is, when the themes to emerge from the participants' discourse became redundant.24,25”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [24] 24. Denzin N, Lincoln Y. Handbook of Qualitative Research. Toronto, ON: Sage; 2003.

      Not checked in the free run.

    • cites [25] 25. Miles M, Huberman A. Qualitative Data Analyses. Toronto, ON: Sage; 2003.

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    Spouse caregivers of younger people with dementia are usually in their 50s and still have children at home.

    “The spouse caregivers of these young persons, whether male or female, are most often in their 50s 13 and still have children at home.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [13] 13. Williams T, Dearden A, Cameron I. From pillar to post: a study of younger people with dementia. Psychiatr Bull. 2001;25(10): 384-387. source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Early-onset Alzheimer's disease is marked mainly by severe praxis, executive, and language impairment rather than memory loss.

    “Regarding Alzheimer's disease, the most common variety found at a younger age (followed by frontotemporal dementia), earlyonset forms are characterized at the neuropsychological level primarily by severe praxis and executive and language impairment rather than memory loss.11”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [11] 11. Koedam E, Lauffer V, van der Vlies A, van der Flier W, Scheltens P, Pijnenburg A. Early versus late-onset Alzheimer's disease: more than age alone. J Alzheimers Dis. 2010;19(4):1401-1408. source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S4 (based). May combine two claims. The quote only partly states this claim.

    Interpretationnone given

    The growing number of couples having to deal with dementia at an early age is a genuine public health concern with repercussions on the entire family.

    “This is a genuine public health concern with repercussions on the entire family.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based).

    Premisenone given

    Newly diagnosed young persons and their spouses tend to fear being stigmatized.

    “In light of the fact that newly diagnosed young persons and their spouses tend to fear being stigmatized”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Caregivers feel distress when they perceive themselves as exceeding the expectations of their relationship identity.

    “A study by Savundranayagam and Montgomery showed that caregivers experience distress when they perceive they are going beyond and above their expectations of the relationship identity.16”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [16] 16. Savundranayagam M, Montgomery R. Impact of role discre- pancies on caregiver burden among spouses. Res Aging. 2010;32(2):175-199. source

      Not checked in the free run.

  • May combine two claims.

    Interpretationnone given

    The stigma associated with dementia influences perceptions, and couples often fear the reactions and judgments of others, especially rejection and incomprehension.

    “The stigma associated with dementia has an influence on perceptions as well.Indeed, couples often fear the reactions and judgments of others, especially rejection and incomprehension.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Premisecitation

    To date, empirically evaluated intervention programs for family members of persons with dementia have been aimed mainly at the primary family caregiver of elderly persons and have used an individual intervention approach.

    “To date, intervention programs for family members of persons with dementia that have been evaluated empirically have been aimed mainly at the primary family caregiver of elderly persons and have employed an individual intervention approach.35”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [35] 35. Parker G, Arsksey H, Harden M. Meta-Review of International Evidence on Interventions to Support Carers. York, UK: Social Policy Research Unit, University of York; 2010.

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S2 (checkable).

    Premisecitation

    Research is needed to understand this experience more deeply so services can be tailored to these spouse caregivers.

    “As expressed by Bakker et al, 21 research is needed to gain a more in-depth understanding of this experience in order to develop services tailored to the needs of these spouse caregivers.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [21] 21. Bakker C, de Vugt M, Vernooil-Dassen M, van Vliet D, Verhey F, Koopmans R. Needs in early onset dementia: a qualitative case from the NeedYD Study. Am J Alzheimers Dis Other Demen. 2010;25(8):634-640. source

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Interpretationnone given

    The difficulty spouse caregivers had in understanding and accepting the care recipient's loss of reference points and inhibitions signals another need for support.

    “The difficulty that spouse caregivers had understanding and accepting the care recipient's loss of reference points and inhibitions signals another need for support.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationcitation

    Some particularities color the discourse of spouse caregivers of younger persons, and unique characteristics emerge from their experiences.

    “However, some particularities color the discourse of the former group and, as mentioned in the review by van Vliet and colleagues, 15 unique characteristics emerge from their experiences.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [15] 15. Van Vliet D, de Vugt M, Bakker C, Koopmans R, Verhey F. Impact of early onset dementia on caregivers: a review. Int J Geriatr Psychiatry. 2010;25(11):1091-1100. source

      Not checked in the free run.

  • May combine two claims.

    Interpretationreasoning

    Once a diagnosis is obtained, couples tend to feel helpless and to become socially isolated, all the more so because no resources are designed specifically for younger couples.

    “This is why, once a diagnosis is obtained, they tend to feel helplessness and to grow socially isolated, all the more so in that there are no resources available designed specifically for younger couples.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    The caregiver role is not adjunctive or complementary to the spousal role but emerges from it and from the spousal relationship that existed before the disease.

    “According to the authors of this theory, the caregiver role is not adjunctive or complementary to that of spouse but rather emerges from it and from the spousal relationship that existed prior to the advent of the disease.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [28] 28. Montgomery R, Kosloski K. Pathways to a caregiver identity for older adults. In: TallyR, MontgomeryR, eds. Caregiving Across the Life Span. New York, NY: Springer; 2013:131-156. source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Dementia diagnosis is always accompanied by psychological upheaval in affected people and their families.

    “Once the diagnosis has been established, the advent of dementia is always associated with psychological upheaval in the persons affected and their families.7”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [7] 7. Werner P, Stein-Shvachman I, Korczyn A. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21(4):631-636. source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    These efforts have helped develop innovative interventions that take into consideration the needs of spouse caregivers and their life circumstances, but they have not allowed explicitly taking account of the longitudinal life course perspective of family caregiving and the family dynamic.

    “Although these efforts have helped develop innovative interventions that allow taking into consideration the needs of spouse caregivers and their life circumstances, they have not allowed explicitly taking account of the longitudinal life course perspective of family caregiving and the family dynamic.36”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [36] 36. Rosenthal C, Greer C. Young children in early-onset Alzheimer's disease families: research gaps and emerging service needs. Am J Alzheimers Dis Other Demen. 2011;26(1):29-35. source

      Not checked in the free run.

41 of 41

  • The paper relies on this without support.

    Dementia is closely associated with aging.

    “Given that dementia continues to be closely associated with aging, studies of early-onset dementias remain relatively scarce”

  • The paper relies on this without support.

    Early-onset dementias are little known even to health care providers.

    “Moreover, early-onset dementias remain a subject little known even to health care providers.”

  • The paper relies on this without support.

    The transition to the caregiver role requires an identity change.

    “The transition to the caregiver role is particularly difficult as it requires marital partners to operate an identity change.”

  • The paper relies on this without support.

    The situation of these caregivers is a genuine public health concern.

    “As a result, the situation of these caregivers is beginning to be taken into account and to be considered a genuine public health concern.”

  • The paper relies on this without support.

    Laymen's representations of dementia cause younger patients and their marital partners to seldom consider dementia.

    “However, owing to laymen's representations of the disease, younger patients and their marital partners seldom consider the possibility of dementia.”

  • The paper relies on this without support.

    The diagnosis of dementia is uncommon at such an early age.

    “The diagnosis of dementia, uncommon at such an early age, was not shared with others”

  • The paper relies on this without support.

    Early-onset dementias affect persons who are active in the labor force and whose employment earnings represent all or part of their family's financial resources.

    “Indeed, early-onset dementias affect persons who are active in the labor force and whose employment earnings represent all or part of their family's financial resources.”

  • The paper relies on this without support.

    Dementia evolves faster at a younger age.

    “The change in this regard owing to the faster evolution of the disease at a younger age is distressing.”
8 of 8

Cites

Flagged first, then by citations

Research works printed but not linked: 8

  1. Ducharme F, 2011, Revue québécoise de psychologie, 32, 155
  2. Lockeridge S, 2012, Dementia
  3. Harris P, 2004, Alzheimers Care Q, 5, 111
  4. Chaston D, 2004, J Dement Care, 12, 24
  5. Coombes E, 2004, J Dement Care, 12, 35
  6. Miles M, 2003, Qualitative Data Analyses
  7. Montgomery R, 2009, Generations, 33, 47
  8. Parker G, 2010, Meta-Review of International Evidence on Interventions to Support Carers

Cited by

Sorted by citations

Related

Authors
Ducharme, F., Kergoat, M.-J., Antoine, P., Pasquier, F., & Coulombe, R.
Affiliations
  • Institut Universitaire de Gériatrie de Montréal (CA)
  • Université de Lille (FR)
Corresponding author
Ducharme, Francine
ORCID
Venue
American Journal of Alzheimer's Disease & Other Dementias®
Publisher
SAGE Publications
Published
2013-07-02
Volume
28
Issue
6
Pages
634-641
ISSN
  • 0888-4897 (ISSN-L)
  • 1533-3175
  • 1938-2731
DOI
10.1177/1533317513494443
PMC
PMC10852552
OpenAlex
W2047826718
Cited by
129
References
32
Citations by year
2026: 4 · 2025: 10 · 2024: 7 · 2023: 12 · 2022: 17 · 2021: 10 · 2020: 8 · 2019: 7 · 2018: 13 · 2017: 15 · 2016: 16 · 2015: 5 · 2014: 5
FWCI
6.13
Type
journal article
Language
en
Open access
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • American Journal of Alzheimer s Disease & Other Dementias® (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Funders
  • Canadian Institutes of Health Research
  • Fonds de Recherche du Québec - Santé
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords
early-onset dementia, spousal caregivers, behavioral and psychological symptoms, delayed diagnosis, non-disclosure, grief, role transition, family support interventions
MeSH terms
Adaptation, Psychological, Alzheimer Disease, Denial, Psychological, Female, Grief, Humans, Male, Middle Aged, Social Support, Stress, Psychological, Caregivers, Age of Onset, Spouses, Pick Disease of the Brain, Lewy Body Disease, Qualitative Research

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-09-29.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-09-29.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review