What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative?

Figures & data

Figure 1.  Flow chart of identification and selection of studies.

Table I.  Overview of features of all included studies.

Authors	Study design and participants	Method and intervention	Outcomes
Brodaty 1994	Survey of 1473 GPs	Questionnaire on diagnosis and management	- GPs experienced difficulties in diagnosis and management - Diagnosis mainly based on passive forms of dementia - GPs reported a lack of standardized protocols for screening, referrals, treatment, and a lack of frontline cooperation and coordination
Bruce 2002	Cross-section of 21 dementia family caregivers and their GP's	Qualitative study with semi-structured interviews GHQ-28 item on caregivers	- GP referrals in dementia care mostly ‘urgent’ or ‘failing caregiver’ - Caregiver: GP too busy and focused on medical matters, unaware of carer problems - GP: supported family but lack of time, caregivers resisted advice
Cheok 1997	Cross-section of 20 GPs	Qualitative study with semi-structured interviews based on two cases for each participant	- Management: reviewing concomitant medication, underlying psychiatric disease, home safety but not ADL as major concern, search contact with informal support, few referrals to formal care, no long-term plan - Diagnosis: poor awareness of guidelines
Cherry 200	Pre–post intervention study with 83 community-dwelling demented elderly patients and their GP	Diagnostic and management guideline, supported by social workers	- Caregiver and care provider satisfaction were higher after the intervention - Higher adherence of GPs to guidelines
Connell 2004	Cross-section of 52 caregivers and their GP (39)	Qualitative study with semi-structured interviews for caregiver and focus groups for GP	- Caregivers: noticed resistance from GP in diagnosis, regretted delay in diagnosis, found communication of diagnosis insensitive, were in shock from diagnosis, felt left alone after diagnosis, suggested GP take more time and communicate in more compassionate way - GP: felt pressured by caregiver, regretted lack of time, felt disclosing diagnosis a challenge and an advantage towards caregivers, avoided ‘dementia, Alzheimer, senility’, disclosed diagnosis in presence of caregiver, reported family caregivers to respond well to diagnosis, provided information
Downs 2006	Cluster randomized trial in 36 practices	Educational support: electronic tutorial, decision-based support and workshops	- Detection rates of dementia improved - Concordance with guidelines did not change
Glosser 1985	Cross-section of 47 caregivers and 57 GPs	Interviews on role of GP in diagnosis, treatment and management	- Diagnosis: difficult for GP but rated helpful by caregiver - Treatment: frustrated regarding relief of symptoms; acknowledged psychosocial impact of dementia, least helpful according to the caregivers
Lin 2005	Cross-section of 111 dementia caregivers	14-item questionnaire	- 97% of caregivers wanted disclosure of diagnosis by GP - 75% of caregivers wanted GP to disclose diagnosis to patient - 48% of caregivers received information about dementia through GP - Less then 5% of caregivers accepted term ‘dementia’, others preferred ‘memory loss’, ‘aging’
McIntosh 1999	Cross-section of 298 GPs and 487 nurses	Structured self-report questionnaire	- Over 50% of GPs: dealing with dementia patients and caregivers difficult - GPs more stressed than nurses by behavioral disturbances, social aspects of the disease - GPs found their role to be less useful than nurses - 70% of GPs routinely tested memory, 58% routinely tested depression in patients
Teel 2004	Cross-section of 19 GPs, qualitative design	Telephone or in-person semi-structured interviews, data categories emerged during analysis, peer debriefing	- Time delay between first symptoms and diagnosis from months to a year - Denial in caregivers main diagnostic challenge - Diagnostic process time-consuming and complex - GPs reluctant to name dementia - Family involvement and support part of treatment - Careful listening most important skill in dementia care - Providing education to family highly important but difficult
Turner 2004	Survey of GPs	Questionnaire on diagnosis and management skills of 127 GPs	- Good knowledge of diagnosis and management - Poor awareness of epidemiology and overestimation of case load - Poor knowledge of local support systems - One-third reported lack of confidence in diagnostic skills, two-thirds lack of confidence in management skills - Main difficulties: talking to caregiver about dementia, coordinating support and assessing problematic behavior
van Hout 2006	Cross-section of 28 GPs, qualitative–quantitative design	Focus groups and questionnaires	- Tasks: guarantee quality of life of patient and caregiver, community services useful, care management not necessarily by GP, diagnosis, practice: take action in progressed stage - Obstacles: time, embarrassment, care management, diagnosis
Werner 2006	Cross-section of 141 GPs, quantitative design	Structured telephone interviews based on two fictive cases, random assignment to one case	- Caregivers more involved by GP than patients, especially when patients’ behavior disturbed - 90% of GPs would try to agree with caregiver
Wilkinson 2004	Multinational survey, 741 dementia caregivers	Telephone interviews about caregiver's perception of diagnosis and treatment of dementia, care time, burden	- 4% of dementias first diagnosed by GP - Mean delay between symptoms and visit six months - Mean delay between symptoms and diagnosis 12 months - 75% of cases first presented to GP - 30% of caregivers dissatisfied with time delay for diagnosis - 50% of caregivers confident in diagnosis and treatment skills of GP, 75% confident in empathy of GP, 80% found GP easily accessible in this matter
Williams 1995	Single cohort with follow-up after three years of 30 caregivers and their GPs	Interviews on information needs of caregivers	- At baseline caregivers wanted information about: possible treatment, future course of illness and cause of symptoms - Three years later caregivers wanted info about: possible treatment, future course and disease inheritance
Yaffe 2002	Cross-section of 142 GPs	Mailing of a 23-item questionnaire on demented–caregiver–GP relationship	- 90% of GPs stated non-medical problems of caregivers as concern - 94% felt they met needs of caregivers - 46% handled caregiver problems themselves - 81% found management of caregivers’ issues stressful - 75% stated payment system insufficient for handling caregivers’ issues - 75% did not attend learning activities regarding caregivers - 80% found diagnosis difficult, 65% concerned about different agendas caregiver–patient