Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study.

OBJECTIVES: The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study.

BACKGROUND: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group. METHODS: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support, and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer's disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes, caregivers' stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors, and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. CONCLUSIONS: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.

[Dementia in Germany: results of an interdisciplinary expert workshop]. / Demenz in Deutschland--Ergebnisse eines interdisziplinären Expertenworkshops.

In the aging population of Germany the consequences of Dementia for the society and the health care sector are complex and solutions require a multidisciplinary approach. The aim of the two-day interdisciplinary expert conference was to consider dementia from different perspectives, to identify dementia-related problems and to discuss integrative solutions under consideration of complementary therapies. In different working groups the experts developed solutions and recommendations with regards to political need, health care and future research priorities. The present recommendations profited very much from the interdisciplinary participants of the conference and brought together the expertise of different fields resulting in a comprehensive picture about dementia in Germany.

Insomnia in neurological diseases.

Insomnia is defined as difficulties of initiating and maintaining sleep, early awakening and poor subjective sleep quality despite adequate opportunity and circumstances for sleep with impairment of daytime performance. These components of insomnia - namely persistent sleep difficulties despite of adequate sleep opportunity resulting in daytime dysfunction - appear secondary or co-morbid to neurological diseases. Comorbid insomnia originates from neurodegenerative, inflammatory, traumatic or ischemic changes in sleep regulating brainstem and hypothalamic nuclei with consecutive changes of neurotransmitters. Symptoms of neurological disorders (i.e motor deficits), co-morbidities (i.e. pain, depression, anxiety) and some disease-specific pharmaceuticals may cause insomnia and/or other sleep problems.This guideline focuses on insomnias in headaches, neurodegenerative movement disorders, multiple sclerosis, traumatic brain injury, epilepsies, stroke, neuromuscular disease and dementia.The most important new recommendations are: Cognitive behavioral therapy (CBTi) is recommended to treat acute and chronic insomnia in headache patients. Insomnia is one of the most frequent sleep complaints in neurodegenerative movement disorders. Patients may benefit from CBTi, antidepressants (trazodone, doxepin), melatonin and gaba-agonists. Insomnia is a frequent precursor of MS symptoms by up to 10 years. CBTi is recommended in patients with MS, traumatic brain injury and. Melatonin may improve insomnia symptoms in children with epilepsies. Patients with insomnia after stroke can be treated with benzodiazepine receptor agonists and sedating antidepressants. For patients with dementia suffering from insomnia trazodone, light therapy and physical exercise are recommended.

Evaluation of a brief educational program for dementia carers: the AENEAS study.

OBJECTIVE: To evaluate the efficacy of a practical, easily implemented, educational intervention in group format for informal carers of persons with dementia. METHODS: Multi-centre, randomised, controlled, single-blind trial involving 292 family caregivers of patients with moderate dementia in Alzheimer's disease. RESULTS: Participants valued program components which had a practical impact on their caring role. The intervention achieved minor effects on the participants' psychological quality of life and did not reduce carer depression. It was also not associated with a lower rate of patient nursing home admissions. A subgroup analysis suggested that the intervention actually promoted the decision for nursing home placement in caregivers who were over-burdened and not coping well when they entered the study. CONCLUSION: To improve dementia carer support, educational components might be intergrated into more comprehensive and individualised interventions which include problem solving and behavioural management strategies, ensure the transfer of newly acquired skills into the everyday context, and adequately deal with the emotional consequences of the caring role.

Occurrence of hypercementosis in a German population.

INTRODUCTION: The purpose of this study was to assess the occurrence of hypercementosis in a selected German dental school patient population. METHODS: A total of 800 full-mouth periapical radiographic series were screened. The radiographs were evaluated under optimal conditions by using double magnifying glasses. A total of 18,589 teeth including third molars were evaluated. The relative incidence of hypercementosis and the correlation regarding the location (left-side versus right-side occurrence, maxillary versus mandibular, and anterior versus posterior teeth) and between men and women were recorded and analyzed by using the χ(2) test. RESULTS: Eleven patients were found to have hypercementosis, 10 women and 1 man (P < .05). Of these, 5 of 11 (45.46%) had only 1 tooth with hypercementosis, and 6 had more than 1 (54.54%). In total, 22 teeth associated with hypercementosis were found. Seven maxillary teeth were associated with hypercementosis (31.82%) and 15 mandibular teeth (68.18%) (P = .198). No significant differences were found regarding left-side and right-side occurrence of the affected teeth (P > .05). Hypercementosis was significantly more often associated with premolars and molars than with incisors (P < .01). Hypercementosis was found in 11 of 800 patients (1.33%). It was identified in 22 of the 18,589 teeth examined (0.12%). CONCLUSIONS: The occurrence of hypercementosis among this selected German population was rare. Female patients were approximately 10 times more often affected than male patients. Mandibular teeth were approximately twice as often associated with hypercementosis as maxillary teeth.

Alzheimer's disease in real life--the dementia carer's survey.

BACKGROUND: Informal care from relatives provides the foundation of care for people with Alzheimer's disease (AD). It is important to understand the conditions under which carers perform their, often neglected, task. The dementia carer's survey aimed to identify carers' needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services. METHODS: The survey was conducted through Alzheimer Europe's member organisations in France, Germany, Poland, Spain and UK (Scotland). The survey was in the form of a questionnaire, and topics addressed included: demographics of carers and people with AD; time spent caring; disclosure of diagnosis; symptoms prompting diagnosis; diagnostic process; current and most distressing symptoms; carers' information requirements; evaluation of services. RESULTS: Each country had approximately 200 responders. Time spent caring increases with disease severity, and 50% of carers of people with late-stage dementia spent more than 10 h/day caring. Activities of daily living and behaviour were cited as the most problematic symptoms, reported by 68% and 50% of carers, respectively. Provision of information on all aspects of AD was felt to be inadequate, with key services such as home support not available to the majority of carers. Only 17% of carers considered the level of care for the elderly in their country as good. CONCLUSIONS: Further development of services and information provision are required to help carers in their everyday caring, including coping with problematic symptoms influencing areas such as activities of daily living and behaviour.