What is a caregiver? Would you know one to see one?

An interactive infographic to better understand the definition from the Act to
recognize and support caregivers

(Touch or click on a title or a box to know more)

la proche aidance

CAREGIVERS PROVIDE SUPPORT TO SOMEONE THEY CARE ABOUT

CAREGIVERS

p

A
friend

A member
of the
family circle
(e.g., a partner
/spouse, child,
parent, other)

A
neighbour

CARE RECEIVERS

For an incapacity that is

  • Permanent or temporary
  • Physical, psychological, psychosocial or other

In the form of

  • Emotional or moral support
  • Daily and domestic assistance
  • Personal care
  • Logistical support

With a view to

  • Promoting that person’s recovery
  • Helping that person maintain or improve their quality of life

In different living environments

  • At home
  • In a health care setting (e.g., hospital, rehabilitation centre)
  • In another setting (e.g., intermediary/family-type resource, long-term care facility)

WHO ARE THEY?

Whose nature is

  • Non-professional
  • Free, informed and revocable

During

  • A short period
  • A while
  • A long time

On a basis that is

  • Regular/continuous
  • Occasional

WHICH MAY HAVE
REPERCUSSIONS ON

Mental or physical health

Family or social life

Working life or education

Financial situation

To know more :

Download the infographic (pdf).

Consult our end notes and references

Ou
Contact us at:
[email protected]

Download the infographic (pdf).

Consult our end notes and references

To cite this document: Quebec Observatory on Caregiving (2023). What is a caregiver? Would you know one to see one? An interactive infographic to better understand the definition from the Act to recognize and support caregivers. CIUSSS West-Central Montreal.

© Quebec Observatory on Caregiving, CIUSSS West-Central Montreal, 2023

Observatoire québécois de la proche aidance avec l'image de logo
logo de partenaire Québec

End notes and references

  1. Compilation by the Institut de la statistique du Québec in February 2022, based on Statistics Canada data from the General Social Survey – Caregiving and Care Receiving (GSS), 2018. Note that these data exclude the population residing permanently in institutions.
  2. Compilation by the Institut de la statistique du Québec in February 2022, based on Statistics Canada data from the General Social Survey – Caregiving and Care Receiving (GSS), 2018.
  3. Assembly of First Nations Quebec—Labrador (AFNQL) and First Nations of Quebec and Labrador Health and Social Services Commission (FNQLHSSC). (2020). (2020). Le rôle essentiel des personnes proches aidantes: une approche culturelle et humaine pour des soins et services de qualité. Joint paper presented as part of the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions. Wendake, 22 pages.
  4. Crosato, K. E., Ward-Griffin, C., and Leipert, B. (2007). Aboriginal women caregivers of the elderly. Rural and Remote Health, 7(4), 796.
  5. Sigle qui représente les différentes communautés de la diversité sexuelle et de genre. Ici, lesbiennes, gais, bisexuel.le.s, trans, queer ou en questionnement. Le signe « + » fait référence à toute autre communauté faisant partie de la diversité sexuelle et de genre non mentionnée dans les premières lettres. Ex. : pansexuel.le.s, non-binaires. For more information, see the Fondation Émergence lexicon: https://en.fondationemergence.org/lexique
  6. Fondation Émergence. (2020). (2020). Reconnaître et inclure les personnes proches aidantes LGBTQ+. Paper presented during the special consultations and public hearings on the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions.
    Gabrielson M., Holston E. C. and Dyck M. J. (2014). Are They Family or Friends? Social Support Instrument Reliability in Studying Older Lesbians. Journal of Homosexuality, 61(11), 1589–1604. https://doi.org/10.1080/00918369.2014.944050
    Hawthorne, O., Camic, P., and Rimes, K. (2020). Understanding the structure, experiences and challenges of social support for older lesbian, gay and bisexual people: A systematic review. Ageing and Society, 40(2), 282–305. https://doi.org/10.1080/00918369.2014.944050
    Wardecker B.M. and Matsick J.L. (2020). Families of Choice and Community Connectedness: A Brief Guide to the Social Strengths of LGBTQ Older Adults. Journal of Gerontological Nursing 46 (2): 5–8. https://doi.org/10.3928/00989134-20200113-01
  7. Brotman, S. and Ferrer, I. (2015). Diversity within family caregiving: Extending definitions of “who counts” to include marginalized communities. HealthcarePapers, 15(1), 47–53.
  8. Fast, J., Keating, N., Otfinowski, P., and Derksen, L. (2004). Characteristics of family/friend care networks of frail seniors. Canadian Journal on Aging, 23(1), 5–19. https://doi.org/10.1353/cja.2004.0003
    Jacobs, M. T., Broese van Groenou, M. I., Aartsen, M. J., and Deeg, D. (2018). Diversity in Older Adults’ Care Networks: The Added Value of Individual Beliefs and Social Network Proximity. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 73(2), 326–336. https://doi.org/10.1093/geronb/gbw012
    Parents jusqu’au bout. (2020). Entre intention et engagement: l’écart à combler. Paper presented as part of the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions.
    Regroupement des aidants naturels. (2020). Paper presented to the Committee on Citizen Relations during the public consultations on the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions. Association féminine d’éducation et d’action sociale. (2020). Pour garder les personnes proches aidantes au cœur de nos préoccupations et de nos services : les reconnaître socialement et économiquement. Paper presented to the Committee on Citizen Relations during the special consultations and public hearings on the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions.
  9. Del-Pino-Casado R., Frías-Osuna A., Palomino-Moral P.A., Ruzafa-Martínez M., Ramos-Morcillo AJ. (2018) Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLOS ONE 13(1): e0189874. https://doi.org/10.1371/journal.pone.0189874
  10. Benson, J. J., Parker Oliver, D., Demiris, G., and Washington, K. (2019). Accounts of Family Conflict in Home Hospice Care: The Central Role of Autonomy for Informal Caregiver Resilience. Journal of Family Nursing, 25(2),190–218. https://doi.org/10.1177/1074840719828091 Hamano, J, Morita, T, Mori, M, Igarashi, N, Shima, Y, Miyashita, M. (2018). Prevalence and predictors of conflict in the families of patients with advanced cancer: A nationwide survey of bereaved family members. Psycho-Oncology. 27. 27: 302– 308. https://doi.org/10.1002/pon.4508
  11. Compilation by the Institut de la statistique du Québec in February 2022, based on Statistics Canada data from the General Social Survey – Caregiving and Care Receiving (GSS), 2018.
  12. Compilation by the Institut de la statistique du Québec in February 2022, based on Statistics Canada data from the General Social Survey – Caregiving and Care Receiving (GSS), 2018. Due to data rounding, total percentage values may not necessarily add up to 100%.
  13. Philibert, M.D., (undated). Handicaps, incapacités, limitation d’activités et santé fonctionnelle, IPCDC. Fact sheet. Online: https://www.inspq.qc.ca/sites/default/files/responsabilite-populationnelle/f010_handicaps_incapacite.pdf
  14. Cloutier E., Grondin C. and Lévesque A. (2018). Canadian Survey on Disability, 2017: Concepts and Methods Guide. Statistics Canada. Online: https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018001-fra.htm This definition is based on the social model of disabilities, whose premise is that “disability is the result of the interaction between a person’s functional limitations and barriers in the environment, including social and physical barriers that make it harder to function day-to-day. Thus, disability is a social disadvantage that an unsupportive environment imposes on top of an individual’s impairment” (Mackenzie et al., 2009).
  15. Dans le réseau de la santé et des services sociaux québécois, les incapacités sont évaluées par le Système de mesure de l’autonomie fonctionnelle (SMAF) en fonction de 29 éléments regroupés en 5 dimensions :
    1. Activities of daily living: eating, washing, dressing, grooming, urinary continence, fecal continence, using the bathroom
    2. Mobility: transfers, walking inside, walking outside, putting on prosthesis or orthosis, moving around in a wheelchair, using the stairs
    3. Communication: seeing, hearing, speaking
    4. Mental functions: memory, orientation, understanding, judgement, behaviour
    5. Instrumental activities of daily living: cleaning the house, preparing meals, shopping, doing the laundry, using the telephone, using public transportation, taking medication, managing a budget
      For more information, see Hebert, R., Carrier, R., and Bilodeau, A. (1988). The Functional Autonomy Measurement System (SMAF): description and validation of an instrument for the measurement of handicaps. Age and Ageing, 17(5), 293–302. https://doi.org/10.1093/ageing/17.5.293
  16. Cloutier E., Grondin C. and Lévesque A. (2018). Canadian Survey on Disability, 2017: Concepts and Methods Guide. Statistics Canada. Online: https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018001-fra.htm
  17. Bourbonnais, A. and Dubé V. (2020). Paper presented during the special consultations and public hearings on the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions.
  18. Confédération des organismes de personnes handicapées du Québec. (2020). Paper on the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions.
    Éthier S. et al. (2020). Paper on the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions.
  19. Conseil du statut de la femme (2020). Les soins aux personnes aînées en perte d’autonomie. Conseil du statut de la femme, 68 pages. https://csf.gouv.qc.ca/wp-content/uploads/soins-personnes-ainees-perte-autonomie.pdf
    Vézina, A., and Pelletier, D. (2004). La participation à l’aide et aux soins des conjoints et des enfants auprès de personnes âgées nouvellement hébergées en centre d’hébergement de soins de longue durée. Canadian Journal on Aging 23(1), 59–71. https://doi.org/10.1017/S0714980800016822
    Metzelthin, S.F., Verbakel, E., Veenstra, M.Y. et al. (2017). (2017). Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study. BMC Geriatrics 17, 232. https://doi.org/10.1186/s12877-017-0620-3
  20. Dussiaume, I. (2016). L’expérience d’être parent d’un enfant polyhandicapé hébergé. Papyrus. http://hdl.handle.net/1866/13989
    Gagné, M. (2003). Les représentations que les familles et le personnel soignant ont de leur rôle auprès des personnes âgées placées en centre d’hébergement. Final report written for the Laboratoire de recherche en sociologie, Université Laval.
    Legault A., Ducharme F. (2009). Advocating for a Parent with Dementia in a Long-term Care Facility: The Process Experienced by Daughters. Journal of Family Nursing, 15(2), 198–219. https://doi.org/10.1177/1074840709332929
  21. John G. Cagle and Jean C. Munn (2012) Long-Distance Caregiving: A Systematic Review of the Literature, Journal of Gerontological Social Work, 55:8, 682–707. https://doi.org/10.1080/01634372.2012.703763
  22. Duong MT, Karlawish J. (2020). Caregiving at a Physical Distance: Initial Thoughts for COVID-19 and Beyond. Journal of the American Geriatrics Society, 68(6), 1170–1172. https://doi.org/10.1111/jgs.16495
  23. Baldassar, L., Baldock, C. V., and Wilding, R. (2007). Families Caring Across Borders: Migration, Ageing and Transnational Caregiving. London: Palgrave Macmillan, 259 pages.
    Dhar, V. E. (2011). Transnational Caregiving: Part 1, Caring for Family Relations Across Nations. Care Management Journals, 12(2), 60–71. https://doi.org/10.1891/1521-0987.12.2.60
    Miyawaki, C. E. et Hooyman, Nancy R. (2021). A systematic review of the literature on transnational caregiving: immigrant adult children to ageing parents in home country. Journal of Family Studies, 1–18
  24. Hamel-Roy, L. (2018). « Je dois mettre dans ma tête que c’est pour rendre service » : Engagements et contraintes de l’emploi des préposées au soutien à domicile embauchées par le Chèque emploi-service. [PhD thesis, Université de Montréal]. Papyrus. http://hdl.handle.net/1866/20362
  25. Broese van Groenou, M.I., De Boer, A. (2016). Providing informal care in a changing society. European Journal of Ageing, 13, 271–279. https://doi.org/10.1007/s10433-016-0370-7
    Comité national d’éthique sur le vieillissement. (2019). (2019). La proche aidance: regard éthique. Online: https://publications.msss.gouv.qc.ca/msss/fichiers/2019/CNEV-2019_proche_aidance.pdf
  26. Éthier, S., Lavigne Boire A-M. and Garon, S. (2014). Plus qu’un rôle d’aidant : s’engager à prendre soin d’un proche atteint de la maladie d’Alzheimer est une responsabilité morale. Vie et vieillissement, 11 (3), 5–13.
    Van Pevenage, I., Dauphinais, C., Dupont, D. and Bourgeois-Guérin, V. (2020). Proche aidance et conjugalité aux âges avancés : motivations et postures. Gérontologie et société, 42(161), 37–54. https://doi.org/10.3917/gs1.161.0037
  27. Fast, J., et al. (2021). Trajectories of family care over the lifecourse: Evidence from Canada. Ageing & Society, 41(5), 1145–1162. https://doi.org/10.1017/S0144686X19001806
    Hamilton, M. G. and E. Adamson (2013). Bounded agency in young carers’ lifecourse-stage domains and transitions. Journal of Youth Studies, 16(1), 101–117. https://doi.org/10.1080/13676261.2012.710743
    Keating, N., et al. (2019). Life course trajectories of family care. International Journal of Care and Caring, 3(2), 147–163.
    Raiber, K., et al. (2022). The wage penalty for informal caregivers from a life course perspective. Advances in Life Course Research, 53, 100490. https://doi.org/10.1016/j.alcr.2022.100490
  28. Carmichael, F. and Ercolani M. G. (2016). Unpaid caregiving and paid work over life-courses: Different pathways, diverging outcomes. Social Science & Medicine, 156, 1–11. https://doi.org/10.1016/j.socscimed.2016.03.020
    Evandrou, M., et al. (2022). Caring trajectories and health in mid-life. Ageing and Society, 1-20. https://doi.org/10.1017/S0144686X22000484
  29. Carmichael, F. and Ercolani M. G. (2016). Unpaid caregiving and paid work over life-courses: Different pathways, diverging outcomes. Social Science & Medicine, 156, 1–11. https://doi.org/10.1016/j.socscimed.2016.03.020
    Raiber, K., et al. (2022). The wage penalty for informal caregivers from a life course perspective. Advances in Life Course Research, 53, 100490. https://doi.org/10.1016/j.alcr.2022.100490
  30. Carmichael, F. and Ercolani M. G. (2016). Unpaid caregiving and paid work over life-courses: Different pathways, diverging outcomes. Social Science & Medicine, 156, 1–11. https://doi.org/10.1016/j.socscimed.2016.03.020
  31. Bourbonnais, A. and Dubé V. (2020). Paper presented during the special consultations and public hearings on the proposed Bill 56: An Act to recognize and support caregivers and to amend various legislative provisions.
  32. Compilation by the Institut de la statistique du Québec in February 2022, based on Statistics Canada data from the General Social Survey – Caregiving and Care Receiving (GSS), 2018. Note that these data exclude the population residing permanently in institutions.
  33. Cohen, C.A., Colantonio, A. and Vernich, L. (2002). Positive aspects of caregiving: rounding out the caregiver experience. International Journal of Geriatric Psychiatry, 17, 184–188. https://doi.org/10.1002/gps.561
    Yu, D. S.F., Sheung-Tak C. et Jungfang W. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1–26. https://doi.org/10.1016/j.ijnurstu.2017.10.008
  34. « [translation] Discrimination in favour of the able-bodied (also known as ableism) is an attitude or behaviour that limits the potential of a person or group of persons with disabilities, particularly physical disabilities ». Office québécois de la langue française (2002). Terminology fact sheet: « discrimination fondée sur les capacités physiques ». Online: https://gdt.oqlf.gouv.qc.ca/ficheOqlf.aspx?Id_Fiche=8362939
  35. Lecours, C. (2015). Portrait des proches aidants et les conséquences de leurs responsabilités d’aidant. Coups d’oeil sociodémographiques (43). Institut de la Statistique du Québec.
  36. Turcotte, M. (2013). Être aidant familial: quelles sont les conséquences? Regard sur la société Canadienne. Statistics Canada.
  37. Lecours, C. (2015). Portrait des proches aidants et les conséquences de leurs responsabilités d’aidant. Coups d’oeil sociodémographiques (43). Institut de la Statistique du Québec.
  38. Savundranayagam, M. Y., and Montgomery, R. J. V. (2010). Impact of Role Discrepancies on Caregiver Burden Among Spouses. Research on Aging, 32(2), 175–199. https://doi.org/10.1177/0164027509351473
    Duggleby, W., et al. (2017). A metasynthesis study of family caregivers’ transition experiences caring for community-dwelling persons with advanced cancer at the end of life. Palliative Medicine, 31(7),602–616. https://doi.org/10.1177/0269216316673548
  39. Lecours, C. (2015). Portrait des proches aidants et les conséquences de leurs responsabilités d’aidant. Coups d’oeil sociodémographiques (43). Institut de la Statistique du Québec.
  40. Lecours, C. (2015). Portrait des proches aidants et les conséquences de leurs responsabilités d’aidant. Coups d’oeil sociodémographiques (43). Institut de la Statistique du Québec.
  41. Drummond, J. D., Brotman, S., Silverman, M., Sussman, T., Orzeck, P., Barylak, L., and Wallach, I. (2013). The Impact of Caregiving: Older Women’s Experiences of Sexuality and Intimacy. Affilia, 28(4), 415–428. https://doi.org/10.1177/0886109913504154
    Fee, A., McIlfatrick, S., and Ryan, A. (2021). When it faded in her . . . it faded in me’: A qualitative study exploring the impact of care-giving on the experience of spousal intimacy for older male caregivers. Ageing and Society, 41(1), 29–50. https://doi.org/10.1017/S0144686X19000850
    Lemelin, C. et Pelletier, C. (2020). Rester amoureux malgré le contexte de proche aidance. Intervention, 151, 133–146.
    Stead, A. et White, J. (2019). Loss of Intimacy: A Cost of Caregiving in Aphasia. Topics in Language Disorders, 39 (1), 55–70.
    Sinković M, Towler L. (2019). Sexual Aging: A Systematic Review of Qualitative Research on the Sexuality and Sexual Health of Older Adults. Qualitative Health Research, 29(9), 1239–1254. https://doi.org/10.1177/1049732318819834
    Van Pevenage, I., Dauphinais, C., Dupont, D. and Bourgeois-Guérin, V. (2020). Proche aidance et conjugalité aux âges avancés : motivations et postures. Gérontologie et société, 42161(1), 37–54. https://doi.org/10.3917/gs1.161.0037
  42. Lackey, N.R. and Gates, M.F. (2001). Adults’ recollections of their experiences as young caregivers of family members with chronic physical illnesses. Journal of Advanced Nursing, 34, 320–328. https://doi.org/10.1046/j.1365-2648.2001.01761.x
    Dellmann-Jenkins, M., and Blankemeyer, M. (2009). Emerging and young adulthood and caregiving. In Shifren K. (Ed.), How Caregiving Affects Development: Psychological Implications for Child, Adolescent, and Adult Caregivers (pp. 93–117). American Psychological Association.
  43. Silverman, M., Brotman S., Molgat M., and Gagnon E. (2020). “I’ve always been the one who drops everything”: The lived experiences and life-course impacts of young adult women carers. International Journal of Care and Caring 4, (3) (08): 331–348. https://doi.org/10.1332/239788220X15859363711424
  44. Lecours, C. (2015). Portrait des proches aidants et les conséquences de leurs responsabilités d’aidant. Coups d’oeil sociodémographiques (43). Institut de la Statistique du Québec.
  45. Lecours, C. (2015). Portrait des proches aidants et les conséquences de leurs responsabilités d’aidant. Coups d’oeil sociodémographiques (43). Institut de la Statistique du Québec.
  46. Duncan, K.A., Shooshtari, S., Roger, K., Fast, J. and Han, J. (2020). The cost of caring: out-of-pocket expenditures and financial hardship among Canadian carers. International Journal of Care and Caring, 4(2), 141–166. https://doi.org/10.1332/239788220X15845551975572
  47. For more information on the repercussions of caregiving on work and schooling, click on the corresponding title.
  48. Commission des droits de la personne et des droits de la jeunesse. (2018). (2018). Mémoire à la Commission de l’économie et du travail de l’Assemblée Nationale projet de loi n° 176, Loi modifiant la loi sur les normes du travail et d’autres dispositions législatives afin principalement de faciliter la conciliation famille-travail.
    Hébert, G. (2017). L’armée manquante au Québec : les services à domicile. Institut de recherche et d’informations socioéconomiques. https://cdn.iris-recherche.qc.ca/uploads/publication/file/Note_SAD_WEB_02.pdf
    Nepal, B., Brown, L., Ranmuthugala, G. and Percival, R. (2011). A Comparison of the Lifetime Economic Prospects of Women Informal Carers and Non-carers, Australia, 2007. Australian Journal of Social Issues, 46(1), 91–108. https://doi.org/10.1002/j.1839-4655.2011.tb00207.x
    Nogues, S.M. and Tremblay, D.-G. (2022). Keeping carers from the “precariat”: availability of carer-friendly workplace policies for employees with adult and elder care responsibilities in Quebec. International Journal of Sociology and Social Policy, https://doi.org/10.1108/IJSSP-12-2021-0308
    Van Pevenage, I. and Reiss M. (2020). Entre les services, les bonnes pratiques et les mesures : mise en perspective du soutien aux personnes proches aidantes. Montreal, Quebec: Integrated Health and Social Services University Network for West-Central Montreal, Centre for Research and Expertise in Social Gerontology (CREGÉS). 140 pages.
  49. Fast, J. (2015). Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges. IRPP Study 58. Montreal: Institute for Research on Public Policy. https://irpp.org/wp-content/uploads/2015/12/study-no58.pdf
  50. Carmichael, F. and Ercolani M. G. (2016). Unpaid caregiving and paid work over life-courses: Different pathways, diverging outcomes. Social Science & Medicine, 156. https://doi.org/10.1016/j.socscimed.2016.03.020
  51. Rafat, H., Wark S. and Ryan P. (2018). Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia. International Journal of Environmental Research and Public Health, 15 (10), 2267. https://doi.org/10.3390/ijerph15102267
  52. Van Pevenage, I. and Reiss M. (2020). Entre les services, les bonnes pratiques et les mesures : mise en perspective du soutien aux personnes proches aidantes. Montreal, Quebec: Integrated Health and Social Services University Network for West-Central Montreal, Centre for Research and Expertise in Social Gerontology (CREGÉS). 140 pages.
  53. Hango, D. (2020). Support received by caregivers in Canada. Statistics Canada: Insights on Canadian Society.
  54. Van Pevenage, I. and Reiss M. (2020). Entre les services, les bonnes pratiques et les mesures : mise en perspective du soutien aux personnes proches aidantes. Montreal, Quebec: Integrated Health and Social Services University Network for West-Central Montreal, Centre for Research and Expertise in Social Gerontology (CREGÉS). 140 pages.
  55. For more information about the impact of caregiving on financial situations, click on the corresponding title.
  56. Hamilton, M. G. and E. Adamson (2013). Bounded agency in young carers’ lifecourse-stage domains and transitions. Journal of Youth Studies, 16(1), 101–117. https://doi.org/10.1080/13676261.2012.710743
    Roling, M., et al. (2020). Early caregiving experiences and the impact on transition into adulthood and further life: a literature review. Scandinavian Journal of Caring Sciences, 34(3), 539–551. https://doi.org/10.1111/scs.12757
    Silverman, M., Brotman S., Molgat M., and Gagnon E. (2020). “I’ve always been the one who drops everything”: The lived experiences and life-course impacts of young adult women carers. International Journal of Care and Caring 4, (3) (08): 331–348. https://doi.org/10.1332/239788220X15859363711424