Quality of life of caregivers of patients with progres­sive neurological dis­ease

Authors: R. Kozáková;  R. Bužgová
Authors‘ workplace: Ústav ošetřovatelství a porodní asistence, LF OU, Ostrava
Published in: Cesk Slov Neurol N 2018; 81(6): 653-657
Category: Review Article
doi: 10.14735/amcsnn2018653


Progres­sive neurological dis­eases have a profound impact on the quality of life of patients and their family caregivers. Abroad, question­naires and scales are used to evaluate caregivers’ quality of life and to provide fol­low-up support and individualized care. The aim of this review article is to describe and analyze the scales used in as­ses­s­­ing the quality of life of caregivers of patients with progres­sive neurological dis­eases. By search­­ing in electronic databases, 11 specific scales designed to as­sess caregivers’ quality of life were found – out of which 6 specific tools for caregivers of patients with dementia, 2 tools for caregivers of patients with Huntington’s dis­ease, 1 scale for caregivers of patients with multiple sclerosis, and 2 scales for caregivers of patients with Parkinson’s dis­ease. These scales are recom­mended to be used in both clinical practice and research.

Key words:

quality of life – caregiver – progressive neurological diseases

The authors declare they have no potential conflicts of interest concerning drugs, products, or services used in the study.

The Editorial Board declares that the manu­script met the ICMJE “uniform requirements” for biomedical papers.


1. Page TE, Farina N, Brown A et al. Instruments measur­­ing the dis­ease specific quality of life of family carers of people with neurodegenerative dis­eases: a systematic review. BMJ Open 2017; 7(3): e013611. doi: 10.1136/bmjopen-2016-013611.

2. Manthorpe J, Bowl­­ing A. Quality of life measures for carers for people with dementia: measurement is­sues, gaps in research and promis­­ing paths. Res Policy Plan 2016; 31(3):163–178.

3. MZ ČR. Národní akční plán pro Alzheimerovu nemoc a další obdobná onemocnění na léta 2016 – 2019. [online]. Praha: MZ ČR 2016. Dostupné z URL: https://www.mzcr.cz/dokumenty/narodni-akcni-plan-pro-alzheimerovu-nemoc-a-dalsi-obdobna-onemocneni-na-leta-201_12997_3216_1.html.

4. Santos RL, Sousa MF, Simoes-Neto JP et al. Caregivers’ quality of life in mild and moderate dementia. Arq Neuropsiquiatr 2014; 72(12): 931–937. doi: 10.1590/0004-282X20140155.

5. Bruvik FK, Ulstein ID, Ranhoff AH et al. The quality of life of people with dementia and their family carers. Dement Geriatr Cogn Disord 2012; 34(1): 7–14. doi: 10.1159/000341584.

6. Papastavrou E, Andreou P, Middleton N et al. Factors as­sociated with quality of life among family members of patients with dementia in Cyprus. Int Psychogeriatr 2014; 26(3): 443–452. doi: 10.1017/S104161021300224X.

7. Takai M, Takahashi M, Iwamitsu Y et al. Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life. Psychogeriatrics 2011; 11(2): 98–104. doi: 10.1111/j.1479-8301.2011.

8. Moreno JA, Nichol­ls E, Ojeda N et al. Caregiv­­ing in dementia and its impact on psychological function­­ing and health-related quality of life: findings from a Colombian sample. J Cross cult Gerontol 2015; 30(4): 393–408. doi: 10.1007/s10823-015-9270-0.

9. Tay KC, Seow CC, Xiao C et al. Structured interviews examin­­ing the burden, coping, self-ef­ficacy, and quality of life among family caregivers of persons with dementia in Singapore. Dementia (London) 2016; 15(2): 204–220. doi: 10.1177/1471301214522047.

10. de Wit J, Bakker LA, van Groenestijn AC et al.Caregiver burden in amyotrophic lateral sclerosis: a systematic revue. Paliat Med 2017: 32(1): 231–245. doi: 10.1177/0269216317709965.

11. Vel­lone E, Piras G, Venturini G, et al. Quality of life for caregivers of people with Alzheimer’s dis­ease liv­­ing in Sardinia, Italy. J Transcult Nurs 2012; 23(1): 46–55. doi: 10.1177/1043659611414199.

12. Wija P. Poskytování a financování dlouhodobé péče v zemích OECD (III) – poskytování neformální péče a její dopad na zaměstnanost a zdraví. [online] Praha: ÚZIS ČR 2012. Dostupné z URL: http://www.uzis.cz/system/files/33_12.pdf.

13. Geis­sler H, Holeňová A, Horová T et al. Závěrečná zpráva z fokusních skupin. [online]. Praha: Fond dalšího vzdělávání 2015. Dostupné z URL: https://koopolis.cz/file/home/download/1208?key=2fd7643342.

14. Vickrey BG, Hays RD, Maines ML et al. Development and preliminary evaluation of a quality of life measure targeted at dementia caregivers. Health Qual Life Outcomes 2009; 7: 56. doi: 10.1186/1477-7525-7-56.

15. Hodgson J, Garcia K, Tyndall L. Parkinson’s dis­ease and the couple relationship: a qualitative analysis. Family Systems & Health 2004; 22(1): 101–118. doi: 10.1037/1091-7527.22.1.101.

16. Tan SB, Wil­liams AF, Mor­ris ME. Experiences of caregivers of people with Parkinson’s dis­ease in Singapore: a qualitative analysis. J Clin Nurs 2012; 21(15–16): 2235–2246. doi: 10.1111/j.1365-2702.2012.04146.x.

17. Wres­sle E, Engstrand C, Granerus A. Liv­­ing with Parkinson’s dis­ease: elderly patients’ and relatives’ perspective on daily living. Aust Occup Ther J 2007; 54(42): 131–139. doi: 10.1111/j.1440-1630.2006.00610.x.

18. Abendroth M, Lutz BJ, Young ME. Family caregivers‘ decision process to institutionalize persons with Parkinson‘s dis­ease: a grounded theory study. IntJ Nurs Stud 2012; 49(4): 445– 454. doi: 10.1016/j.ijnurstu.2011.10.003.

19. McLaughlin D, Has­son F, Kernohan WG et al. Liv­­ing and cop­­ing with Parkinson’s dis­ease: perceptions of informal carers. Pal­liat Med 2011; 25(2): 177–182. doi: 10.1177/0269216310385604.

20. Gelfman LP, Meier DE, Mor­rison RS. Does pal­liative care improve quality? A survey of bereaved family members. J Pain Symp­tom Manage 2008; 36(1): 22–28. doi: 10.1016/j.jpainsym­man.2007.09.008.

21. Melo CG, Oliver D. Can addres­s­­ing death anxiety reduce health care workers‘ burnout and improve patient care? J Pal­liat Care 2011; 27(4): 287–295.

22. Strand JJ, Kamdar MM, Carey EC. Top 10 things pal­liative care clinicians wished everyone knew about pal­liative care. Mayo Clin Proc 2013; 88(8): 859–865. doi: 10.1016/j.mayocp.2013.05.020.

23. Oliver DJ, Borasio GD, Caraceni AA. Consensus review on the development of pal­liative care for patients with chronic and progres­sive neurological dis­ease. Eur J Neurol 2016; 23(1): 30–38. doi: 10.1111/ene.12889.

24. Doward LC. The development of the Alzheimer’s carers quality of life instrument. Qual Life Res 1997; 6 (Suppl 7–8): 639.

25. Quirk A, Smith SC, Hamilton S et al. Development and validation of the Carer Wel­l – Be­­ing and Sup­port (CWS) question­naire: report for the National Institute for Health Research Service Delivery and Organisation Program­me. London: Queen‘s Printer and Control­ler of HMSO 2009. Available from URL: https://www.rcpsych.ac.uk/pdf/CWS%20final%20report%20-%20SDO%20website%20version.pdf.

26. Cole CC, Ito D, Chen YJ et al. Impact of Alzheimer’sdis­ease on caregiver question­naire: internal consisten­-cy, convergent validity, and test-retest reliability of a new measure for as­ses­s­­ing caregiver burden.Health Qual Life Outcomes 2014; 12: 114. doi: 10.1186/s12955-014-0114-3.

27. Thomas P, Lal­loue F, Preux PM et al. Dementia patients caregivers quality of life: the PIXEL study. Int J Geriatr Psychiatry 2006; 21(1): 50–56. doi: 10.1002/gps.1422.

28. Logsdon RG, Gibbons LE, McCur­ry SM et al. Quality of life in Alzheimer‘s dis­ease: patient and caregiver reports. J Ment Health Ag­­ing 1999; 5(1): 21–32.

29. Aubeeluck A, Buchanan H. The Huntington’s dis­ease quality of life battery for carers: reliability and validity. Clin Genet 2007; 71(5): 434–445.

30. Aubeeluck A, Dorey J, Squitieri F et al. Further evidence of reliability and validity of the Huntington’s dis­ease quality of life battery for carers: Italian and French translations. Qual Life Res 2013; 22(5): 1093–1098. doi: 10.1007/s11136-012-0227-2.

31. Benito-Leon J, Rivera-Navar­ro J, Guer­rero AL et al. The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis. J Clin Epidemiol 2011; 64(6): 675–686. doi: 10.1016/j.jclinepi.2010.08.003.

32. Jenkinson C, Dum­mett S, Kel­ly L et al. The development and validation of a quality of life measure for the carers of people with Parkinson’s dis­ease (the PDQ-Carer). Parkinsonism Relat Disord 2012; 18(5): 483–487. doi: 10.1016/j.parkreldis.2012.01.007.

33. Morley D, Dum­mett S, Kel­ly L et al. The PDQ-Carer: development and validation of a sum­mary index score. Parkinsonism Relat Disord 2013; 19(4): 448–449. doi: 10.1016/j.parkreldis.2012.11.018.

34. Pil­las M, Selai C, Quinn NP et al. Development and validation of a carers quality-of-life question­naire for parkinsonism (PQoL Carers). Qual Life Res 2016; 25(1): 81–88. doi: 10.1007/s11136-015-1071-y.

35. Batista P, Pereira A. Quality of life in patients with neurodegenerative dis­eases. J Neurol a Neurosci 2016; 7(1): 74. doi: 10.21767/2171-6625.100074.

36. Paulsen JS, Nance M, Kim J et al. A review of quality of life after predictive test­­ing for and earlier identification of neurodegenerative dis­eases. Prog Neurobio­l 2013; 110: 2–28. doi: 10.1016/j.pneurobio­.2013.08.003.

37. Jocham HR, Das­sen T, Widders­shoven G et al. Reliability and validity of the EORTC QLQ 30 in pal­liative care cancer patients. Cent Eur J Med 2009; 4(3): 348–357.

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