How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

Abstract

BackgroundThis study aims to review the methodologies used to identify the needs, the existing needs assessment instruments and the main topics of needs explored among caregivers of patients with mild cognitive impairment to dementia.MethodsMEDLINE, PsycINFO, The Cochrane Library and Web of science were searched from January 1980 to January 2017. Research studies in English or French were eligible for inclusion if they fulfilled the following criteria: quantitative, qualitative and mixed method studies that used instrument, focus group or semi-structured interviews to assess the informal caregiver’s needs in terms of information, coping skills, support and service.ResultsSeventy studies (n = 39 quantitative studies, n = 25 qualitative studies and n = 6 mixed method studies) met the inclusion criteria and were included. Thirty-six quantitative instruments were identified but only one has been validated for the needs assessment of dementia caregivers: the Carer’s Needs Assessment for Dementia (CNA-D). The main areas of needs explored in these instruments were: information, psychosocial, social, psychoeducational and other needs.ConclusionsNo instrument has been developed and validated to assess the needs of informal caregivers of patients with cognitive impairment, whatever the stage and the etiology of the disease. As the perceived needs of caregivers may evolve with the progression of the disease and the dementia transition, their needs should be regularly assessed.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-017-0481-9) contains supplementary material, which is available to authorized users.

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

“…The range of needs described in themes 1 and 2 are generally consistent with prior research on dementia care in healthcare settings. Needs commonly described include receiving relevant information about dementia management, disease progression, and symptoms, provider's lack of knowledge or inability to provide useful community resources, and accessing sources of support for psychological distress . Only one study described theneed for PwD/caregivers to have information about whether or where to seek treatment for acute health or behavior‐related problems—corroborating our stakeholders' experiences about accessing emergency services out of “desperation” and lack of knowledge about other options .…”

“…Needs commonly described include receiving relevant information about dementia management, disease progression, and symptoms, provider's lack of knowledge or inability to provide useful community resources, and accessing sources of support for psychological distress. 4,26,[28][29][30][31][32][33][34][35] Only one study described theneed for PwD/caregivers to have information about whether or where to seek treatment for acute health or behavior-related problems-corroborating our…”

“…It is estimated that in 2017, 6.1 million US adults had dementia, including mild cognitive impairment, and another 46.7 million had preclinical‐stage dementia . Persons with dementia (PwD) have complex medical and social needs that are often unpredictable due to substantial disease heterogeneity and changes with disease progression . As frequent users of the healthcare system, PwD and their caregivers rely extensively on emergency department (ED) services to address acute medical needs and challenging behavioral symptoms, more so than other older adults .…”

“…3 Persons with dementia (PwD) have complex medical and social needs that are often unpredictable due to substantial disease heterogeneity and changes with disease progression. 4 As frequent users of the healthcare system, PwD and their caregivers rely extensively on emergency department (ED) services to address acute medical needs and challenging behavioral symptoms, more so than other older adults. 1,5,6 ED use by PwD has been associated with higher rates of poor outcomes, including greater 30-day ED return rates; increased delirium, falls, behavioral problems, and mortality rates; and decreases in physical function.…”

Online behavior of the alzheimer's disease patient caregivers on croatian online discussion forum

“…A multi-stage content analysis was conducted. In the first stage of the analysis, a set of initial codes was derived from the existing literature, in particular based on the coding schemes developed in Edelman et al (2006), Kucmanski et al (2016), Novais et al (2017), Wackerbarth and Johnson (2001), Wancata et al (2005), Whitlatch and Orsulic-Jeras (2018), and Zwaanswijk et al (2013) whose coding models focused on information, service, and support needs of AD patient CGs. In our study, all initial posts (83 total) were coded using this initial coding scheme both to evaluate their value and to identify missing codes.…”