What are the caregivers’ needs on dementia care? An integrated qualitative and quantitative assessment
- 101 Downloads
Dementia is one of the main causes of disability later in life. Interventions in support of patients with dementia aim at granting the highest level of independence in activities of daily living and at delivering the required facilities; formal and informal caregivers represent the interface between patients and health services. The aims of our study were to assess caregivers’ perceived needs and to relate them to their own socio-cultural features and to patients’ clinical characteristics. During three consecutive months, 50 caregivers of patients with dementia were interviewed about their needs in the assistance of subjects with dementia by means of three structured questionnaires (Caregiver Needs Assessment [CNA], Zarit Burden Inventory [ZBI], Neuropsychiatric Inventory–Questionnaire [NPI-Q]) and of two open-ended questions. Higher scores of CNA (suggestive of more needs) were associated with a major burden in caregiving and were related to a more severe behavioral and psychological profile of patients with dementia. ZBI was highly correlated with NPI distress score. Among caregivers, the children of patients reported more needs, particularly about information on disease and how to cope with it. CNA emerged as a complete and reliable instrument, with need for safety being the only item missing from the questionnaire and identified by means of the open-ended questions. Our results showed how the use of simple and brief instruments can increase the communication between health operators and caregivers and could thus improve the quality of formal and informal assistance.
KeywordsCaregiver Need Dementia Care
We thank the Associazione per la Ricerca sulle Demenze (ARD) ONLUS for making this study possible.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
- 5.Black BS, Johnston D, Rabins PV, Morrison A, Lyketsos C, Samus QM (2013) Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. J Am Geriatr Soc 61:2087–2095. https://doi.org/10.1111/jgs.12549 CrossRefPubMedPubMedCentralGoogle Scholar
- 19.Salvi F, Miller MD, Grilli A, Giorgi R, Towers AL, Morichi V, Spazzafumo L, Mancinelli L, Espinosa E, Rappelli A, DessÃ¬-Fulgheri P (2008) A manual of guidelines to score the modified cumulative illness rating scale and its validation in acute hospitalized elderly patients. J Am Geriatr Soc 56:1926–1931. https://doi.org/10.1111/j.1532-5415.2008.01935.x CrossRefPubMedGoogle Scholar
- 20.Cova I, Clerici F, Rossi A, Cucumo V, Ghiretti R, Maggiore L, Pomati S, Galimberti D, Scarpini E, Mariani C, Caracciolo B (2016) Weight loss predicts progression of mild cognitive impairment to Alzheimer’s disease. PLoS One 11:e0151710. https://doi.org/10.1371/journal.pone.0151710 CrossRefPubMedPubMedCentralGoogle Scholar
- 21.Bulmer MG (1979) Principles of statistics. Dover, New YorkGoogle Scholar
- 25.Dal Bello-Haas VPM, Cammer A, Morgan D et al (2014) Rural and remote dementia care challenges and needs: perspectives of formal and informal care providers residing in Saskatchewan, Canada. Rural Remote Health 14:2003–2004Google Scholar