Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments

Wolfs, Claire; Vugt, Marjolein E. de; Verkaaik, Mike; Verkade, Paul-Jeroen; Verhey, Frans R.J.

doi:10.1002/gps.2451

Cited by 40 publications

(66 citation statements)

References 10 publications

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“…The reason could lie in the unawareness of informal caregivers regarding available services, or informal caregivers not wanting to relinquish care. 33,37 Possible cultural aspects may also influence who, informal caregivers believe, is responsible for delivering dementia care at home. Moreover, an important reason for not mentioning lack of formal care could be that the current range of available services does not meet the needs of informal caregivers.…”

Section: Discussionmentioning

confidence: 99%

Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

Afram¹,

Stephan

Verbeek³

et al. 2014

Journal of the American Medical Directors Association

184

146

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Objectives:To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries.Design: An explorative cross-sectional study was conducted in eight European countries. Setting:Per country a minimum of three long-term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe. Participants:Of the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long-term care facility, 786 were included for this study. Measurements:As part of a semi-structured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested. Results:Mainly patient related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%) and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in the majority of countries. Beside patient related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analysed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared to child-caregivers. Conclusion:Multiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia.

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Section: Discussionmentioning

confidence: 99%

Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

Afram¹,

Stephan

Verbeek³

et al. 2014

Journal of the American Medical Directors Association

184

146

View full text Add to dashboard Cite

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“…Access to family physicians trained in geriatrics [52][53][54]66,86,88,92 Need for access to a family physician who has adequate knowledge of the disease, is sensitive to the concerns of patient and caregiver, can provide guidance on dementia, and can follow patients with dementia and their caregivers.…”

mentioning

confidence: 99%

“…Access to other health care professionals trained in geriatrics 65,70,73,81,[86][87][88] Need for access to health care professionals who know the disease, respond competently at disclosure of the diagnosis, and communicate test results clearly. Need for help with ADL (commonly for bathing/dental care, dressing, and walking) and with IADL (commonly for housekeeping, meal preparation, and transportation).…”

mentioning

confidence: 99%

“…Care coordination/continuity of care/well-defined care pathway [52][53][54]64,65,67,68,73,86,98 Need for continuity between the various health care services involved, access to services corresponding to the severity of the disease, support throughout the course of the disease from the same health care professionals, and coordination of medical and community services to optimize services and prevent overlap.…”

mentioning

confidence: 99%

“…Education/ counseling [59][60][61][62][63][64][65][66][67][68][72][73][74][75]79,80,82,[85][86][87][88][89][92][93][94][95][96][97] Need for specific information on medical and interpersonal aspects of the disease, meaningful counseling on dealing with behavioral problems, guidelines on dementia before and after diagnosis.…”

mentioning

confidence: 99%

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Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

Khanassov

Vedel

2016

Ann Fam Med

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PURPOSE Dementia case management (CM) in primary care is a complex intervention aimed at identifying the various needs of patients with dementia and their caregivers, as well as the organization and coordination of care. A key element of CM is the collaboration of family physicians with case managers. We conducted a systematic mixed-studies review to identify the needs of the patientcaregiver dyad and the effects of CM. METHODSWe searched MEDLINE, PsycINFO, and EMBASE up to October 2014, regardless of the study design. Our main outcomes were needs of patients and their caregivers and the effects of CM on these needs. We used narrative syntheses to develop a taxonomy of needs and to describe the effects of CM on those needs. We used meta-analysis to calculate the prevalence of needs and the standardized mean differences to evaluate the effects of CM on the needs identified.RESULTS Fifty-four studies were included. We identified needs of the patientcaregiver dyad and needs of the patient and caregiver individually. CM addressed the majority of the identified needs. Still, some very common needs (eg, early diagnosis) are overlooked while other needs (eg, education on the disease) are well addressed. Fully establishing the value of CM is difficult given the small number of studies of CM in primary care.CONCLUSIONS There is good evidence that case managers, in collaboration with family physicians, have a pivotal role in addressing the needs of the patientcaregiver dyad. 2016;14:166-177. doi: 10.1370/afm.1898. Ann Fam Med INTRODUCTIONT he proportion of people with dementia is growing dramatically. According to the US Alzheimer's Association, by 2030, 50% of Americans aged 65 years and older will be diagnosed with dementia. 1 In Canada in 2011, 747,000 Canadians lived with cognitive impairment.2 Today, the combined costs are $33 billion per year, 1 and they are projected to increase to $872 billion by 2038. 3,4 Worldwide, dementia is the main contributor to disability-adjusted life years (11.2%), representing a greater burden than cerebral vascular accident (9.5%), heart disease (5.0%), or cancer (2.4%). 5People with dementia need help with challenging changes in behavior, memory, physical disability, and mood. 6 The main source of help is family caregivers, who often suffer from the burdens of caregiving and from depression and health problems. 7 It has been shown that early intervention makes the greatest difference in management of symptoms. 1 The World Health Organization states that it would be challenging to intervene without effective involvement of primary care. 8 Dementia case management (CM) interventions are becoming a central component of primary health care organizations in North America and Europe. [9][10][11][12] According to the 167Case Management Society of America, case management is "a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual's and family's comprehensive health needs through communi...

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Development and usability of a decision support App for nurses to facilitate aging in place of people with dementia

Thoma‐Lürken

Lexis

Bleijlevens

et al. 2018

Applied Nursing Research

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Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments

Cited by 40 publications

References 10 publications

Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

Development and usability of a decision support App for nurses to facilitate aging in place of people with dementia

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