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The aim of this thesis is to explore fear of choking and fear of falling in people with Huntington's disease (HD) and their caregivers. Dysphagia and falls are common in HD and may lead to fear of choking and fear of falling. However, knowledge about this is mostly lacking, as well as knowledge about the relationship between cognitive and emotional factors and these types of fear. The study confirms that fall prevalence (29% over a 30-day period) and prevalence of dysphagia symptoms (90%) are high. However, a prevalence of about 50% is also reported for fear of choking and fear of falling in people with HD. However, their informal caregivers report the most fear. Severity of dysphagia symptoms was a predictor of fear of choking, and anticipatory awareness of fall risks and gender were found to be predictors of fear of falling. In most individuals with HD, a combination of preventive measures was used.Future research can improve both management of dysphagia and fear of choking and management of falls and fear of falling. Because questioning people with HD is sometimes difficult, due to speech and cognitive difficulties, diagnostic tools may be sought to facilitate this, such as wearable electronic devices.

Objectives To explore the prevalence of dysphagia and fear of choking in patients with Huntington’s disease (HD) as well as preventive measures, both those applied and those not included in managing dysphagia. Also, to investigate related problems encountered by their formal and informal caregivers. Design A multi-center observational cross-sectional study Setting and Participants 158 HD patients, recruited from six Dutch nursing homes specialized in HD, and their formal and informal caregivers Measurements Patients were assessed by means of questionnaires enquiring about dysphagia, fear of choking and measures to manage dysphagia. Also, questionnaires were administered about awareness of dysphagia symptoms, cognition and anxiety. Because we expected individuals with greater care dependency to have a higher severity of dysphagia, we distinguished between a care-independent and a care-dependent group of HD patients. Results In the total group, 90.5% of HD patients had one or more dysphagia symptoms. The prevalence of FoC in HD patients and the formal and informal caregivers’ fears about choking in HD patients was 45.7%, 19.0% and 59.5%, respectively, for care-independent patients and 58.7%, 50.1% and 77.5% for care-dependent patients. The score on the Huntington’s Disease Dysphagia Scale was a predictor for fear of FoC in care-independent patients. Speech-language therapy, supervision during eating and drinking and adaptation of food and drink consistency were the most frequently applied measures to manage dysphagia, a combination was used in most HD patients. Conclusions In HD patients, the prevalence of dysphagia is high and fear of choking is common among both patients and caregivers. A more severe degree of dysphagia is a predictor of FoC in care-independent HD patients. A combination of measures was used to manage dysphagia in most HD patients.

Background: Dysphagia and accidental falls are common in patients with Huntington’s disease; they can have serious consequences and may, therefore lead to fear of choking and fear of falling. Objectives: In this article, a protocol is described to explore the prevalence of fear of choking and fear of falling in patients with Huntington’s disease, to identify the relationship between fear of choking and fear of falling and, respectively, anxiety, awareness and cognitive functioning and to define the care demands with regard to fear of choking and fear of falling. In addition, the related problems encountered by their (in)formal caregivers are investigated. Design: This study protocol describes a multi-center observational cross-sectional study. Participants: Our aim is to include 150 patients with Huntington’s Disease living in or attending day care in Dutch nursing homes specialized in Huntington’s Disease and their (in)formal caregivers. Setting: Dutch nursing homes, specialized in long-term care for patients with Huntington’s Disease. Measurements: The patients will be assessed by means of questionnaires enquiring about mobility, swallowing and their feelings and experiences related to these topics, a mobility task, a cognitive screening and a neurological examination. Other patient information will be derived from regular patient files, registered by formal caregivers. Data about fear of choking and fear of falling from the formal and informal caregiver’s perspective will be obtained by means of self–administered questionnaires. Conclusions: This study may contribute to improving insight into the cognitive, emotional and behavioral functioning of patients with Huntington’s disease. The findings may lead to relevant interventions for patients or support advice for caregivers, with regard to adequate coping strategies for risk-taking behavior.

Context: Choking and accidental falls are common incidents in patients with Huntington’s disease (HD). It is not clear which emotional and cognitive factors contribute to the development of fear of choking (FoC) or fear of falling (FoF). Objective: To explore the relationship between cognition, awareness and anxiety and experiencing FoC or FoF in HD, Parkinson’s disease (PD) and dementia. As the literature on HD is expected to be limited, the study population will be expanded by also looking at PD and dementia, both of which are neurodegenerative diseases that share symptoms and signs with HD. Methods: A systematic review of English, German and Dutch articles using the electronic databases: MEDLINE, Embase, CINAHL and Psychinfo. Only studies describing the influence of cognition, awareness and anxiety on the outcome measures FoF and FoC in patients with HD, PD or dementia were included Results: For HD, no reports were found related to the objective of the study and no studies on FoC were found for PD or dementia. The results of studies addressing FoF in PD and dementia were contradictory as far as the relationship with cognition (PD n=5; dementia n=8) and anxiety (PD n=2) was concerned. No study on FoF in relation to awareness was found in any patient group. Conclusions: Although dysphagia and accidental falls are common symptoms of HD, PD and dementia, data on emotional and cognitive factors and their relationship with FoC and FoF are limited. Available data are inconsistent. Future research focusing specifically on these topics might lead to better insight into the relationship between FoC, FoF and cognitive, emotional and behavioral functioning of patients with these diseases. Better insight in these subjects could result in therapeutic options for patients or guidelines for caregivers, with regard to prevention and coping strategies, to improve quality of care.