Background
Research questions
Methods
Search strategies
Strategy 1: Gray literature databases
Strategy 2: Google search engines
Strategy 3: Targeted websites
Strategy 4: Contacted experts
Strategy 5: Search in academic electronic databases
Additional citation tracking
Selection of evidence sources
Criteria | Definition |
---|---|
Population | - People with symptoms of dementia (with or without a dementia diagnosis) - Relatives of people with symptoms of dementia (with or without a dementia diagnosis) |
Concept of Interest | - Counseling according to §7a SGB XI related to the care of people with dementia (with or without a dementia diagnosis) - Counseling about care is not part of the nursing process |
Context | - Germany |
Types of evidence | - Focus on gray literature in the form of (evaluation) reports, practice articles and theses - Literature published in peer-reviewed journals |
Other | - Languages: German and English - Year: no restrictions |
Data extraction
Presentation of the results
General information | Study design, methods, and participants | Results |
---|---|---|
Primary publication: Bartholomäus, Gruschinski [44] Publication type: Report Aim: Implementation/Evaluation of the FIDEM (Frühe Informationen und Hilfe bei Demenz) concept | Study design: ■ Implementation of the FIDEM concept with evaluation (mixed methods design) Methods and participants: ■ Standardized fax system (n = no information) ■ Interviews with primary care physicians (n = no information) and relatives (n = 14) ■ Questionnaires for the evaluation of the workshops (primary care physicians n = 55; medical assistants n = 117) ■ Questionnaires for the general evaluation (primary care physicians n = 20; medical assistants n = 17; social service workers n = 27) | ■ The FIDEM concept consistently focuses on the care of primary care physicians and the referral of patients with dementia to nonmedical support services and offers a structured cross-sectoral approach involving all stakeholders ■ The FIDEM network consists of various actors such as primary care physicians, self-help groups, occupational therapy, low-threshold care and respite services and care counseling ■ The care counseling according to §7a SGB XI is one of the actors in the FIDEM network |
Primary publication: Beikirch, Braeseke [48] Additional publication: No information Publication type: Report Aim: Analysis of the status quo in the existing care support centers regarding coordination and networking tasks as well as quality assurance | Study design: ■ Evaluation Methods and participants: ■ Literature research and analysis ■ Nationwide online survey of care support points (n = 184) ■ Workshops (n = 2) with representatives of providers and employees from care support points in various German states | ■ 144 care support points stated that they cooperate with dementia services ■ 79% of the care support points rated this cooperation as good (among the top 3) |
Primary publication: Braeseke, Delekat [49] Additional publication: No information Publication type: Report Aim: Evaluation of the work of the care support points in the state of Brandenburg as a basis for deriving targeted measures for further development of care counseling according to §7a | Study design: ■ Evaluation Methods and participants: ■ Focus groups (n = 12 staff from 6 care support points, of which n = 6 care counselors, n = 4 social counselors, n = 2 network coordinator) ■ Web-based activity recording (14 days) and analysis (n = 50) ■ Online survey of staff at care support points, including branch offices and outreach offices (n = 41) ■ Online survey for structural assessment (n = 36 care support points) ■ Online survey of regional actors (e.g., actors in the district or city administration, home care services, counseling centers) (n = 426) ■ Written survey of the users of the care support points (n = 253) ■ Online discussion (n = 27, consisting of care counselors, social counselors, other care support point staff, network representatives, administration/county administration/city administration/ministry), health/care insurance fund, disability representative/advisory board/advocate, self-help association) | ■ 69.9 % of the care counselors in the counseling service centers are trained for counseling according to §7a SGB XI ■ 38.7 % of the surveyed users (or their relatives) have a need for help and support due to mental disability (e.g., dementia) ■ Desire of the interviewed counselors of the counseling service centers for further training on the topic of dementia ■ Desire of the interviewed counselors of the counseling service centers for further training on the topic of dementia ■ 80 % of the surveyed care support counselors use target group-specific information material ■ Need for more outreach and target group-specific counseling services for people with dementia and their relatives ■ 14.6% of the surveyed counselors in the care support points refer to a (specific trained) colleague within the counseling service center ■ From the point of view of the regional stakeholders, the needs of people with dementia or their relatives can be met by the counseling service centers (41.2% stated yes, 28.2% partly) ■ 43.9% of the surveyed counselors of the counseling service centers stated that they frequently cooperate with dementia counseling centers, 46.3% occasionally, 2.4% usually do not cooperate at all ■ 41.5% of the surveyed counselors of the counseling service centers refer to relevant counseling services (e.g., dementia counseling services, network partners, self-help groups) ■ Improvement of the use of counseling according to §7a is discussed with the linkage of the obligatory counseling visits according to §37 Abs3 SGB XI |
Primary publication: Dehl, Nolting [50] Additional publication: GKV-Spitzenverband [51] Publication type: Report Aim: Evaluation of care counseling and structures according to § 7a paras. 1-4, 7-8, §7b Ans. 1-2 and §7c SGB XI as well as counseling interventions in the patient's own home according to §37 paras. 3-8 SGB XI within the framework of the legal reporting obligation according to §7a par. 9 SGB XI | Study design: ■ Evaluation Methods and participants: ■ Nationwide analysis: ■ Secondary data (official nursing care statistics, routine data from the care insurance, data from the Federal Medical Service) ■ Online survey of care insurers (n = 37) ■ Survey of insured persons (applicant) (n = 2250) ■ Survey of insured persons (care allowance recipients) (n = 2676) ■ In-depth regional analysis: ■ Investigation counseling structures ■ Focus groups (n = 15; care counselors of the care insurance and service providers of the care insurance, care support points, municipal representatives, representatives of those affected, outpatient and/or inpatient care facilities, hospitals, and other local counseling centers) ■ Online survey of counseling centers (n = 99; of which n = 39 offer counseling according to §7a SGB XI) ■ Online survey of care counselors (n = 294; of which n = 262 provide counseling according to §7a SGB XI, n = 88 provide counseling according to §37 para. 3 SGB XI) ■ Telephone interviews with users of the counseling service (n = 8) ■ Written survey of the users of the counseling service (n = 299) | ■ Counseling in accordance with §7a SGB XI does not, for the most part, include separate counseling services for people with dementia and their relatives ■ 74.7% (n = 29) of the counseling centers offering care counseling according to § 7a SGB XI state that they have dementia expertise ■ 72.0% (n = 177) of the counselors surveyed, use (additionally) specially tailored information material for people with dementia and their relatives ■ 35.4% (n = 87) of the counselors surveyed refer inquiries from people with dementia and their relatives to specially trained colleagues or to special counseling centers ■ 39.8% (n = 98) of the care counselors surveyed have received special advanced training or continuing education in counseling relatives of people with dementia ■ Counseling requests from people with dementia and/or their relatives accounted for 31.6% of the average counseling volume within four weeks ■ In most regions, there are specialized contact points for people with dementia and their relatives, e.g., dementia service centers in their region, regional offices "Aging, Care and Dementia", Alzheimer Society, etc., in addition to the counseling service according to §7a SGB XI ■ From the perspective of the care counselors, cooperation with specialized local services, e.g., with contact points for people with dementia, is rated as good |
Primary publication: Lobenwein [52] Additional publication: No information Publication type: Practice article Aim: Field report on dementia counseling using the example of the Neuendettelsau Deaconry's specialist center for family caregivers at the Roth Care Support Center | Study design: Methods and participants: ■ Report of one care counselor | Overall ■ Relatives of people with dementia usually take up the offer of counseling only after a “long road" (existence of dementia) ■ People with dementia often take up the offer of counseling in the early stages of their disease Procedure of contacting and counseling ■ Contact usually by telephone ■ Counseling appointment at the counseling service center or at home (approx. 90 min) ■ The initial situation is clarified in the first counseling (e.g., symptoms, resources) Needs and topics of counseling ■ Dementia and experience ↪ Basic knowledge about and understanding of the disease ↪ Relationship changes ↪ Changing behavior (e.g., self-harm, behavior that challenges the caregivers) ↪ Acceptance of dementia Burden ↪ Own helplessness ↪ Solutions and reflection of conflict situations ↪ Interaction with people with dementia General conditions ↪ Determining and applying for payments from long-term care insurance ↪ Transition to primary care physician for diagnosis of dementia ↪ Medical treatment ↪ Clarification of the legal situation (e.g., guardianship, health care proxy) Help and support services ↪ Acknowledgment that supports services are necessary ↪ Informing and counseling about relief options ↪ Building a relief system |
Primary publication: Paulicke [53] Publication type: Theses/literature published in peer-reviewed journal Aim: Identification of information and counseling needs of caregiving family members of people with dementia for the integration of assistive technologies into care and theoretical conceptualization of a transformative understanding of information and counseling | Study design: ■ Sequential-explorative study design ■ Mixed methods survey Methods and participants: ■ Focus groups with relatives of people with dementia (n = 46) ■ Expert interviews with counselors (n = 5) ■ Survey of counselors (§7a SGB XI) (n = 47) using standardized questionnaire | General aspects of counseling for relatives of people with dementia ■ Basic requirements for counseling relatives of people with dementia ↪ Simple access to counseling ↪ Comprehensible language ↪ Establishing a relationship ↪ Trust as the basis of counseling (especially for older relatives of people with dementia) ↪ Long-term counseling ↪ Fixed contact person ↪ Embedding of counseling in existing services that are regularly used by the relatives of people with dementia ■ Barriers to counseling relatives of people with dementia ↪ Low level of awareness: Many family caregivers are generally unaware of the possibility for counseling ↪ Limited time resources among relatives Digitalization of counseling from the counselors’ point of view ■ Video-based counseling ↪ Counseling via telephone ↪ E-mail exchange ↪ Simple and easy design of digitalization Assistive technologies as a counseling topic from the counselors’ point of view ■ Counseling on assistive technologies should be an integral part of the counseling process ■ Forms of mediation of assistive technologies ↪ Sample integration ↪ Possibility of testing ↪ Handbooks ↪ Outreach counseling at the homes of people with dementia and their relatives ■ Younger counselors are described as more suitable for counseling on assistive technologies ■ Counseling skills need to be enhanced in relation to assistive technologies Assistive technologies as a counseling topic from the perspective of relatives of people with dementia ■ Assistive technologies are not perceived as subject for counseling and other information opportunities ■ Relatives are more likely to receive information about assistive technologies to support caregiving (e.g., through acquaintances, support groups, pharmacies) by chance ■ Wishes of the relatives of people with dementia ↪ Information about assistive technologies in established settings and social gathering places and/or communities (e.g., church congregation, senior afternoons) ↪ Involvement of health insurance companies & municipalities as contact partners ■ Counseling & training on assistive technologies ↪ Integration into care and/or dementia counseling ↪ In form of test days, trying out assistive technologies, guidance by nurses |