Dynamic process of family burden in dementia caregiving: a new field for psychotherapeutic interventions

Families caring for a patient with dementia are prone to significant physical, psychological and social stress. It is now well established that the caregiver burden does not only negatively affect the caregiver's physical and mental health, but is also associated with an increase in behavioural and psychiatric symptoms of dementia. Burden determinants include the quality of the relationship between the patient and caregiver; patient variables, such as the need to manage the behavioural and psychological symptoms of dementia; and also caregiver variables, such as the satisfaction of caring, demographic characteristics and societal roles. The standardised assessment of interventions for caregivers in dementia care remains a difficult task. In recent years, family interventions that focus on the process of burden itself in relation to the caregiver's subjective experience of personal growth and enrichment have been proposed. This new approach is based on the identification of tasks and challenges faced by family members throughout the different stages of the disease. In this context, brief crisis interventions transform periods of disorganisation experienced by the family into opportunities for change, whereas rehabilitation interventions developed by professional caring networks offer a continuous assessment and advice to the family. This article provides a critical review of the consequences and determinants of caregiver burden in dementia care with special reference to the emerging notion of the caregiver's subjective experience in the context of family processes. (PsycINFO Database Record (c) 2006 APA, all rights reserved) (journal abstract

Life- and person-centred help in Mecklenburg-Western Pomerania, Germany (DelpHi): study protocol for a randomised controlled trial

<p>Abstract</p> <p>Background</p> <p>The provision of appropriate medical and nursing care for people with dementia is a major challenge for the healthcare system in Germany. New models of healthcare provision need to be developed, tested and implemented on the population level. Trials in which collaborative care for dementia in the primary care setting were studied have demonstrated its effectiveness. These studies have been conducted in different healthcare systems, however, so it is unclear whether these results extend to the specific context of the German healthcare system.</p> <p>The objective of this population-based intervention trial in the primary care setting is to test the efficacy and efficiency of implementing a subsidiary support system on a population level for persons with dementia who live at home.</p> <p>Methods and study design</p> <p>The study was designed to assemble a general physician-based epidemiological cohort of people above the age of 70 who live at home (DelpHi cohort). These people are screened for eligibility to participate in a trial of dementia care management (DelpHi trial). The trial is a cluster-randomised, controlled intervention trial with two arms (intervention and control) designed to test the efficacy and efficiency of implementing a subsidiary support system for persons with dementia who live at home. This subsidiary support system is initiated and coordinated by a dementia care manager: a nurse with dementia-specific qualifications who delivers the intervention according to a systematic, detailed protocol. The primary outcome is quality of life and healthcare for patients with dementia and their caregivers. This is a multidimensional outcome with a focus on four dimensions: (1) quality of life, (2) caregiver burden, (3) behavioural and psychological symptoms of dementia and (4) pharmacotherapy with an antidementia drug and prevention or suspension of potentially inappropriate medication. Secondary outcomes include the assessment of dementia syndromes, activities of daily living, social support health status, utilisation of health care resources and medication.</p> <p>Discussion</p> <p>The results will provide evidence for specific needs in ambulatory care for persons with dementia and will show effective ways to meet those needs. Qualification requirements will be evaluated, and the results will help to modify existing guidelines and treatment paths.</p> <p>Trial registration</p> <p>NCT01401582</p