Informal caregivers’ main doubts when caring for elderly people with dementia: a qualitative study

Authors

  • Joana Chagas Médica Interna de Medicina Geral e Familiar. USF Jardim dos Plátanos, ULS Lisboa Ocidental. Linda-a-Velha, Portugal.
  • Margarida Peixoto Médica Interna de Medicina Geral e Familiar. USF Jardim dos Plátanos, ULS Lisboa Ocidental. Linda-a-Velha, Portugal.
  • Ana Isabel Silva Médica Interna de Medicina Geral e Familiar. USF Dafundo, ULS Lisboa Ocidental. Cruz Quebrada, Portugal.
  • Carolina Sotana Médica Interna de Medicina Geral e Familiar. USF Jardim dos Plátanos, ULS Lisboa Ocidental. Linda-a-Velha, Portugal.
  • Daniela Ribeiro Médica Interna de Medicina Geral e Familiar. USF Jardim dos Plátanos, ULS Lisboa Ocidental. Linda-a-Velha, Portugal.
  • Diogo Santos Médico Interno de Medicina Geral e Familiar. USF Linda-a-Velha, ULS Lisboa Ocidental. Linda-a-Velha, Portugal.
  • Joana Brites Médica Interna de Medicina Geral e Familiar. USF Linha de Algés, ULS Lisboa Ocidental. Algés, Portugal.
  • Joana Cavaco Médica Interna de Medicina Geral e Familiar. USF Lusa, ULS Lisboa Ocidental. Carnaxide, Portugal.
  • Laura Lopes Médica Interna de Medicina Geral e Familiar. USF Conde de Oeiras, ULS Lisboa Ocidental. Oeiras, Portugal.
  • Luísa Marques Médica Interna de Medicina Geral e Familiar. USF Linha de Algés, ULS Lisboa Ocidental. Algés, Portugal.
  • Mafalda Lobato Médica Interna de Medicina Geral e Familiar. USF Conde de Oeiras, ULS Lisboa Ocidental. Oeiras, Portugal.
  • Rebeca Hatherly Médica Interna de Medicina Geral e Familiar. USF Delta, ULS Lisboa Ocidental. Paço de Arcos, Portugal.
  • Renata Soares Médica Interna de Medicina Geral e Familiar. USF Lusa, ULS Lisboa Ocidental. Carnaxide, Portugal.
  • Sara Nabais Médica Interna de Medicina Geral e Familiar. USF São Julião, ULS Lisboa Ocidental. Oeiras, Portugal.

DOI:

https://doi.org/10.32385/rpmgf.v42i1.14166

Keywords:

Informal caregivers, Elderly, Dementia, Doubts, Needs

Abstract

Introduction: An informal caregiver is an individual without formal training, who assists a person who is unable to carry out activities of daily living, for example, a person with dementia. It is estimated that a quarter of caregivers’ experience anxiety and depression. Literature shows that the caregivers who are most comfortable with providing care are those with more knowledge, better self-care and personal life management.

Objectives: The main objective was to survey the main doubts of informal caregivers of elderly people with dementia. Secondary objectives were to characterize the informal caregivers as well as assess their training needs.

Methods: A cross-sectional qualitative study was carried out with semi-structured interviews with caregivers of elderly people with dementia. The sample was selected through purposive sampling to obtain a more heterogeneous sample. The interviews were carried out until sample saturation was reached. These were transcribed and then NVivo software was used to analyze the data, by searching for common themes and sub-themes, using the methodological orientation of grounded theory.

Results: Of the 12 participants selected, six (50%) were women and most were family members of the elderly person with dementia. The main challenge mentioned by the participants was their tiredness and overload. As for doubts, they were related to the provision of care, communication, and managing the behavior of the elderly person with dementia, cognitive stimulation, the evolution of the disease, and the social support available.

Conclusion: This study has provided valuable insights for understanding the most frequent doubts felt by informal caregivers of elderly people with dementia, highlighting first-person testimony. It is essential to invest in training programs that meet these specific needs to empower caregivers to provide higher-quality care with less associated burden.

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References

1. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2):217-28.

2. Associação Alzheimer Portugal. Prevalência da demência [homepage]. Associação Alzheimer Portugal; 2022 Apr 18 [cited 2023 Sep 12]. Available from: https://alzheimerportugal.org/prevalencia-da-demencia/

3. Stephan BC, Birdi R, Tang EY, Cosco TD, Donini LM, Licher S, et al. Secular trends in dementia prevalence and incidence worldwide: a systematic review. J Alzheimers Dis. 2018;66(2):653-80.

4. Gale SA, Acar D, Daffner KR. Dementia. Am J Med. 2018;131(10):1161-9.

5. Farina N, Page TE, Daley S, Brown A, Bowling A, Basset T, et al. Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimers Dement. 2017;13(5):572-81.

6. Oliveira MA, Queirós C, Guerra MP. O conceito de cuidador analisado numa perspectiva autopoiética: do caos à autopoiese [The caregivers concept analysed in an autopoietic perspective: from the chaos to the autopoiesis]. Psicol Saúde Doenç. 2007;8(2):181-96. Portuguese

7. Lei nº 100/2019, de 6 de setembro. Diário da República. I Série;(171).

8. Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20(8):423-8.

9. Cooper C, Balamurali TB, Livingston G. A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia. Int Psychogeriatr. 2007;19(2):175-95.

10. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108(9 Suppl):23-7.

11. Berwig M, Heinrich S, Spahlholz J, Hallensleben N, Brähler E, Gertz HJ. Individualized support for informal caregivers of people with dementia: effectiveness of the German adaptation of REACH II. BMC Geriatr. 2017;17(1):286.

12. Fialho J, Silva C, Saragoça J. Diagnóstico social: teoria, metodologia e casos práticos. Lisboa: Sílabo; 2015. ISBN 9789726188377

13. Soares GM. A sobrecarga dos cuidadores informais de idosos com demência: projeto de apoio ao cuidador [dissertation]. Lisboa: ISCTE – Instituto Universitário de Lisboa; 2018. Available from: https://www.iscte-iul.pt/tese/7771

14. Monteiro C. Cuidadores informais de pessoas com demência: perceções e necessidades socioeducativas [dissertation]. Bragança: Escola Superior de Educação/Instituto Politécnico de Bragança; 2016. Available from: http://hdl.handle.net/10198/13909

15. Mendonça A, editor. Guia sobre a demência de início precoce [homepage]. Associação Alzheimer Portugal; 2022 [cited 2023 Sep 13]. Available from: https://alzheimerportugal.org/guia-sobre-a-demencia-de-inicio-precoce/

16. Hwang SS, Chang VT, Alejandro Y, Osenenko P, Davis C, Cogswell J, et al. Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center. Palliat Support Care. 2003;1(4):319-29.

17. Delalibera M, Presa J, Barbosa A, Leal I. Sobrecarga no cuidar e suas repercussões nos cuidadores de pacientes em fim de vida: revisão sistemática da literatura [Burden of caregiving and its repercussions on caregivers of end-of-life patients: a systematic review of the literature]. Cien Saude Colet. 2015;20(9):2731-47. Portuguese

18. Akgun-Citak E, Attepe-Ozden S, Vaskelyte A, van Bruchem-Visser RL, Pompili S, Kav S, et al. Challenges and needs of informal caregivers in elderly care: qualitative research in four European countries, the TRACE project. Arch Gerontol Geriatr. 2020;87:103971.

19. Harding R, Epiphaniou E, Hamilton D, Bridger S, Robinson V, George R, et al. What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention. Support Care Cancer. 2012;20(9):1975-82.

20. Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250-67.

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Published

2026-03-04

Issue

Vol. 42 No. 1 (2026): Revista Portuguesa de Medicina Geral e Familiar

Section

Original Research

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How to Cite

Informal caregivers’ main doubts when caring for elderly people with dementia: a qualitative study. (2026). Portuguese Journal of Family Medicine and General Practice, 42(1), 33-44. https://doi.org/10.32385/rpmgf.v42i1.14166

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