Skip to main content

Advertisement

SpringerLink
Log in

The patient–caregiver dyad: the impact of cognitive and functional impairment

  • Original Article
  • Published:
Neurological Sciences Aims and scope Submit manuscript

Abstract

This study evaluates the cognitive impairment impact on the caregiver’s burden and quality of life.

Patient–caregiver dyads admitted to dementia Diagnostic-Therapeutic Care Pathway underwent a psychological and neuropsychological assessment. Overall, 30 caregivers (age 58.97 ± 14.68) of patients with dementia and 28 caregivers (age 58.57 ± 12.22) of patients with MCI were recruited. Caregiver’s burden is positively correlated to the number (r = .37, p = .003) and severity (r = .37, p = .003) of neuropsychiatric patient’s symptoms and with the caregiver’s distress (r = .36, p = .004). It is also negatively related to good quality of life perception (r =  − .52, p =  < .0001), to lower cognitive impairment (r =  − .26, p = .05), to higher patient’s residual functional abilities in daily living (r =  − .32, p = .010) and to positive perception of the physician’s communication (r =  − .28, p = .026). Moreover, the caregiver’s burden is significantly predicted by the patient’s low level of instrumental activity of daily living (β =  − .74; p = .043) and by the number of neuropsychiatric symptoms (β = .74; p = .029). Thus, this study suggests that the autonomy and neuropsychiatric symptoms may determine the caregiver’s burden.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. American Psychiatric Association (APA) (2013) DSM-5. Manuale diagnostico e statistico dei disturbi mentali. Raffello Cortina Editore, Milano

  2. Sachs-Ericsson N, Blazer DG (2015) The new DSM-5 diagnosis of mild neurocognitive disorder and its relation to research in mild cognitive impairment. Aging Ment Health 19:2–12. https://doi.org/10.1080/13607863.2014.920303

    Article  PubMed  Google Scholar 

  3. Petersen RC, Lopez O, Armstrong MJ et al (2018) Practice guideline update summary: mild cognitive impairment: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology 90:126–135. https://doi.org/10.1212/WNL.0000000000004826

    Article  PubMed  PubMed Central  Google Scholar 

  4. Ganguli M, Dodge HH, Shen C, DeKosky ST (2004) Mild cognitive impairment, amnestic type: an epidemiologic study. Neurology 63:115–121. https://doi.org/10.1212/01.wnl.0000132523.27540.81

    Article  PubMed  Google Scholar 

  5. Geda YE, Roberts RO, Knopman DS et al (2008) Prevalence of neuropsychiatric symptoms in mild cognitive impairment and normal cognitive aging: population-based study. Arch Gen Psychiatry 65:1193–1198. https://doi.org/10.1001/archpsyc.65.10.1193

    Article  PubMed  PubMed Central  Google Scholar 

  6. Prince M, Comas-Herrera A, Knapp M, Guerchet M, Karagiannidou M (2016) World Alzheimer report 2016: improving healthcare for people living with dementia: coverage, quality and costs now and in the future. Alzheimer’s Disease International (ADI), London, UK. Available at: http://eprints.lse.ac.uk/id/eprint/67858

  7. Davis DHJ, Creavin ST, Noel-Storr A, Quinn TJ, Smailagic N, Hyde C, Brayne C, McShane R, Cullum S (2013) Neuropsychological tests for the diagnosis of Alzheimer’s disease dementia and other dementias: a generic protocol for cross-sectional and delayed-verification studies. Cochrane Dement Cogn Improv Group 28(3):CD010460

  8. Devier DJ, Villemarette-Pittman N, Brown P et al (2010) Predictive utility of type and duration of symptoms at initial presentation in patients with mild cognitive impairment. Dement Geriatr Cogn Disord 30:238–244. https://doi.org/10.1159/000320137

    Article  PubMed  PubMed Central  Google Scholar 

  9. Zappella E (2019) Valutare la qualità della vita nei soggetti con demenza: una rassegna delle principali scale di misurazione [Evaluating the quality of life for people with dementia: a review of the main measurement scales]. FORMAZIONE & INSEGNAMENTO. Rivista Internazionale di Scienze dell'educazione e della formazione 16(2):381–400

  10. Birren J, Lubben Rowe JJ (1991) The concept and measurement of quality of life in the frail elderly. Academic Press, San Diego

  11. Farina N, Page TE, Daley S et al (2017) Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimers Dement 13:572–581. https://doi.org/10.1016/j.jalz.2016.12.010

    Article  PubMed  Google Scholar 

  12. Etters L, Goodall D, Harrison BE (2008) Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract 20:423–428. https://doi.org/10.1111/j.1745-7599.2008.00342.x

    Article  PubMed  Google Scholar 

  13. Adams KB (2006) The transition to caregiving: the experience of family members embarking on the dementia caregiving career. J Gerontol Soc Work 47:3–29. https://doi.org/10.1300/J083v47n03_02

    Article  PubMed  Google Scholar 

  14. Raggi A, Tasca D, Panerai S et al (2015) The burden of distress and related coping processes in family caregivers of patients with Alzheimer’s disease living in the community. J Neurol Sci 358:77–81. https://doi.org/10.1016/j.jns.2015.08.024

    Article  PubMed  Google Scholar 

  15. Miller DA (1981) The “sandwich” generation: adult children of the aging. Soc Work 26:419–423

    Google Scholar 

  16. Grabher BJ (2018) Effects of Alzheimer disease on patients and their family. J Nucl Med Technol 46:335–340. https://doi.org/10.2967/jnmt.118.218057

    Article  PubMed  Google Scholar 

  17. Martin LR, DiMatteo MR (2013) The Oxford Handbook of Health Communication, Behavior Change, and Treatment Adherence. Oxford University Press, New York

    Book  Google Scholar 

  18. Vrijens B, De Geest S, Hughes DA et al (2012) A new taxonomy for describing and defining adherence to medications. Br J Clin Pharmacol 73:691–705. https://doi.org/10.1111/j.1365-2125.2012.04167.x

    Article  PubMed  PubMed Central  Google Scholar 

  19. Roberto KA, Blieszner R, McCann BR, McPherson MC (2011) Family triad perceptions of mild cognitive impairment. J Gerontol B Psychol Sci Soc Sci 66:756–768. https://doi.org/10.1093/geronb/gbr107

    Article  PubMed  Google Scholar 

  20. Lingler JH, Terhorst L, Schulz R et al (2016) Dyadic analysis of illness perceptions among persons with mild cognitive impairment and their family members. Gerontologist 56:886–895. https://doi.org/10.1093/geront/gnv029

    Article  PubMed  Google Scholar 

  21. Poon E (2019) A systematic review and meta-analysis of dyadic psychological interventions for BPSD, quality of life and/or caregiver burden in dementia or MCI. Clin Gerontol 1–21.https://doi.org/10.1080/07317115.2019.1694117

  22. Petersen RC (2011) Clinical practice. Mild cognitive impairment. N Engl J Med 364:2227–2234. https://doi.org/10.1056/NEJMcp0910237

    Article  CAS  PubMed  Google Scholar 

  23. McKhann GM, Knopman DS, Chertkow H et al (2011) The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement 7:263–269. https://doi.org/10.1016/j.jalz.2011.03.005

    Article  PubMed  PubMed Central  Google Scholar 

  24. (1994) Clinical and neuropathological criteria for frontotemporal dementia. The Lund and Manchester Groups. J Neurol Neurosurg Psychiatry 57:416–418. https://doi.org/10.1136/jnnp.57.4.416

  25. McKeith IG, Galasko D, Kosaka K et al (1996) Consensus guidelines for the clinical and pathologic diagnosis of dementia with Lewy bodies (DLB): report of the consortium on DLB international workshop. Neurology 47:1113–1124. https://doi.org/10.1212/wnl.47.5.1113

    Article  CAS  PubMed  Google Scholar 

  26. Román GC, Tatemichi TK, Erkinjuntti T et al (1993) Vascular dementia: diagnostic criteria for research studies. Report of the NINDS-AIREN International Workshop. Neurology 43:250–260

    Article  PubMed  Google Scholar 

  27. Goetz CG, Emre M, Dubois B (2008) Parkinson’s disease dementia: definitions, guidelines, and research perspectives in diagnosis. Ann Neurol 64(Suppl 2):S81-92. https://doi.org/10.1002/ana.21455

    Article  PubMed  Google Scholar 

  28. Measso G, Cavarzeran F, Zappalà G et al (1993) The mini-mental state examination: normative study of an Italian random sample. Dev Neuropsychol 9:77–85. https://doi.org/10.1080/87565649109540545

    Article  Google Scholar 

  29. Magni E, Binetti G, Bianchetti A et al (1996) Mini-Mental State Examination: a normative study in Italian elderly population. Eur J Neurol 3:198–202. https://doi.org/10.1111/j.1468-1331.1996.tb00423.x

    Article  CAS  PubMed  Google Scholar 

  30. Siciliano M, Raimo S, Tufano D et al (2016) The Addenbrooke’s Cognitive Examination Revised (ACE-R) and its sub-scores: normative values in an Italian population sample. Neurol Sci 37:385–392. https://doi.org/10.1007/s10072-015-2410-z

    Article  PubMed  Google Scholar 

  31. Stein J, Luppa M, Luck T et al (2012) The assessment of changes in cognitive functioning: age-, education-, and gender-specific reliable change indices for older adults tested on the CERAD-NP battery: results of the German Study on Ageing, Cognition, and Dementia in Primary Care Patients (AgeCoDe). Am J Geriatr psychiatry Off J Am Assoc Geriatr Psychiatry 20:84–97. https://doi.org/10.1097/JGP.0b013e318209dd08

    Article  Google Scholar 

  32. Arevalo-Rodriguez I, Smailagic N, Roqué I Figuls M, et al (2015) Mini-Mental State Examination (MMSE) for the detection of Alzheimer’s disease and other dementias in people with mild cognitive impairment (MCI). Cochrane database Syst Rev 2015:CD010783. https://doi.org/10.1002/14651858.CD010783.pub2

  33. EuroQol Research Foundation (2019) EQ-5D-3L User Guide. https://euroqol.org/publications/user-guides. Accessed January 2020

  34. Spitzer RL, Kroenke K, Williams JBW, Group and the PHQPCS (1999) Validation and utility of a self-report version of PRIME-MD The PHQ Primary Care Study. JAMA 282:1737–1744. https://doi.org/10.1001/jama.282.18.1737

  35. Spitzer RL, Kroenke K, Williams JBW, Löwe B (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166:1092–1097. https://doi.org/10.1001/archinte.166.10.1092

    Article  PubMed  Google Scholar 

  36. Scala D, Menditto E, Armellino MF et al (2016) Italian translation and cultural adaptation of the communication assessment tool in an outpatient surgical clinic. BMC Health Serv Res 16:163. https://doi.org/10.1186/s12913-016-1411-9

    Article  PubMed  PubMed Central  Google Scholar 

  37. Rossi Ferrario S, Baiardi P, Zotti AM (2004) Update on the family strain questionnaire: a tool for the general screening of caregiving-related problems. Qual life Res Int J Qual life Asp Treat care Rehabil 13:1425–1434. https://doi.org/10.1023/B:QURE.0000040795.78742.72

    Article  Google Scholar 

  38. Katz TF (1963) A.D.L. activities of daily living. J Am Med Assoc 185:914–919

    Article  CAS  Google Scholar 

  39. Laicardi C, Pezzuti L, Sberna S (1998) La valutazione dell’autonomia strumentale quotidiana dell’anziano (IADL): validazione di una nuova modalità di punteggio. RICERCHE DI PSICOLOGIA, 1/1998.

  40. Cummings JL, Frank JC, Cherry D et al (2002) Guidelines for managing Alzheimer’s disease: part I. Assessment. Am Fam Physician 65:2263–2272

    PubMed  Google Scholar 

  41. Kaufer DI, Cummings JL, Ketchel P et al (2000) Validation of the NPI-Q, a brief clinical form of the neuropsychiatric inventory. J Neuropsychiatry Clin Neurosci 12:233–239. https://doi.org/10.1176/jnp.12.2.233

    Article  CAS  PubMed  Google Scholar 

  42. Gómez-Gómez ME, Zapico SC (2019) Frailty, cognitive decline, neurodegenerative diseases and nutrition interventions. Int J Mol Sci 20:2842. https://doi.org/10.3390/ijms20112842

    Article  CAS  PubMed Central  Google Scholar 

  43. Wassel JI (2006) Financial planning and the “senior sandwich” generation. J Financ Serv Prof 60(2):22–26

  44. Fingerman KL, VanderDrift LE, Dotterer AM et al (2011) Support to aging parents and grown children in Black and White families. Gerontologist 51:441–452. https://doi.org/10.1093/geront/gnq114

    Article  PubMed  PubMed Central  Google Scholar 

  45. Infurna FJ, Gerstorf D, Lachman ME (2020) Midlife in the 2020s: opportunities and challenges. Am Psychol 75:470–485

    Article  PubMed  PubMed Central  Google Scholar 

  46. Terum TM, Andersen JR, Rongve A et al (2017) The relationship of specific items on the neuropsychiatric inventory to caregiver burden in dementia: a systematic review. Int J Geriatr Psychiatry 32:703–717. https://doi.org/10.1002/gps.4704

    Article  PubMed  Google Scholar 

  47. Viazzo PP (2003) What’s so special about the Mediterranean? Thirty years of research on household and family in Italy. Contin Chang 18:111–137. https://doi.org/10.1017/S0268416003004442

    Article  Google Scholar 

  48. Annerstedt L, Elmståhl S, Ingvad B, Samuelsson SM (2000) Family caregiving in dementia–an analysis of the caregiver’s burden and the “breaking-point” when home care becomes inadequate. Scand J Public Health 28:23–31. https://doi.org/10.1177/140349480002800106

    Article  CAS  PubMed  Google Scholar 

  49. Carretero S, Garcés J, Ródenas F, Sanjosé V (2009) The informal caregiver’s burden of dependent people: theory and empirical review. Arch Gerontol Geriatr 49:74–79. https://doi.org/10.1016/j.archger.2008.05.004

    Article  PubMed  Google Scholar 

  50. Tilburgs B, Vernooij-Dassen M, Koopmans R et al (2018) The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study. BMC Geriatr 18:184. https://doi.org/10.1186/s12877-018-0872-6

    Article  PubMed  PubMed Central  Google Scholar 

  51. Maffoni M, Traversoni S, Costa E et al (2020) Medication adherence in the older adults with chronic multimorbidity: a systematic review of qualitative studies on patient’s experience. Eur Geriatr Med 11:369–381. https://doi.org/10.1007/s41999-020-00313-2

    Article  CAS  PubMed  Google Scholar 

  52. Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ et al (2015) Neuropsychiatric symptoms and caregiver’s burden in Parkinson’s disease. Parkinsonism Relat Disord 21:629–634. https://doi.org/10.1016/j.parkreldis.2015.03.024

    Article  PubMed  Google Scholar 

  53. Signe A, Elmståhl S (2008) Psychosocial intervention for family caregivers of people with dementia reduces caregiver’s burden: development and effect after 6 and 12 months. Scand J Caring Sci 22:98–109. https://doi.org/10.1111/j.1471-6712.2007.00498.x

    Article  PubMed  Google Scholar 

Download references

Funding

This work was partially supported by the “Ricerca Corrente” funding scheme of the Ministry of Health, Italy.

Author information

Authors and Affiliations

  1. Psychology Unit, Istituti Clinici Scientifici Maugeri IRCCS, Montescano Institute, Montescano, PV, Italy

    Valeria Torlaschi, Marina Maffoni, Giulia Maltauro, Antonia Pierobon & Martina Vigorè

  2. Department of Biomedical Engineering, Istituti Clinici Scientifici Maugeri IRCCS, Montescano Institute, Montescano, PV, Italy

    Roberto Maestri

  3. Neurophysiopatology Unit, Istituti Clinici Scientifici Maugeri IRCCS, Montescano Institute, Montescano, PV, Italy

    Pierluigi Chimento, Michelangelo Buonocore & Cira Fundarò

  4. Department of Neurology, Genetics, Maternal and Child Health, University of Genoa and IRCCS Scientific Clinical Institutes Maugeri, RehabilitationPavia, Ophthalmology, Italy

    Gianluigi Mancardi

Authors
  1. Valeria Torlaschi
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Marina Maffoni
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Giulia Maltauro
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Antonia Pierobon
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Martina Vigorè
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Roberto Maestri
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Pierluigi Chimento
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Michelangelo Buonocore
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Gianluigi Mancardi
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Cira Fundarò
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Valeria Torlaschi.

Ethics declarations

Ethical approval

This study was approved by the institutional review board and the central ethics committee of the ICS Maugeri SpA SB (approval number: CEC N.2315, 11/06/2019).

Conflict of interest

The authors declare no competing interests.

Additional information

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Torlaschi, V., Maffoni, M., Maltauro, G. et al. The patient–caregiver dyad: the impact of cognitive and functional impairment. Neurol Sci 43, 2481–2490 (2022). https://doi.org/10.1007/s10072-021-05712-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10072-021-05712-2

Keywords

Search

Navigation