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Hypersexuality in Neurological Disorders

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Hypersexuality in Neurological Disorders HYPERSEXUALITY IN NEUROLOGICAL DISORDERS NATALIE AHMAD MAHMOUD TAYIM A thesis submitted to the Institute of Neurology in fulfilment of the requirements for the degree of Doctor of Philosophy (PhD) University College London January 2019 Declaration of originality I, Natalie Ahmad Mahmoud Tayim, confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. _________________________________ Natalie Ahmad Mahmoud Tayim ii Abstract The issue of hypersexuality in neurological disorders is grossly underreported. More research has been done into sexual dysfunction (outside of hypersexuality) in neurological disorders such as erectile dysfunction and hyposexuality (loss of libido). Furthermore, in Parkinson’s disease research, most mention of hypersexuality has been in conjunction with other impulse control disorders and has therefore not been examined in depth on its own. Although in recent years hypersexuality has become more recognized as an issue in research, there is still very limited information regarding its manifestations, impact, and correlates. It is therefore important to explore this area in detail in order to broaden understanding associated with this sensitive issue. Perhaps in doing so, barriers will be broken and the issue will become more easily discussed and, eventually, more systematically assessed and better managed. This thesis aims to serve as an exploratory paper examining prevalence, clinical phenomenology, impact, and potential feasible psychological interventions for hypersexuality in patients with neurological disorders and their carers. The thesis is divided into three main studies: 1. Study I: systematic review assessing prevalence, clinical phenomenology, successful treatment modalities, implicated factors contributing to the development, and assessment tools for hypersexuality in specific neurological disorders. 2. Study II: systematic investigation using qualitative and quantitative methods assessing prevalence, clinical phenomenology, and impact on both patients with Parkinson’s disease and dementia and their carers. 3. Study III: investigation of feasible psychological/behavioural management modalities and the development of a public-facing psychoeducational website providing patients and carers with succinct, proper information about hypersexuality in neurological disorders. The thesis revealed the following: a. Prevalence figures regarding hypersexuality in neurological disorders reported in the literature were inconsistent, which might be due to the varied assessment tools used to assess it, lack of insight of patients into their hypersexuality and its consequences, and the inherent challenges and stigma associated with discussing matters relating to sex and/or sexuality that causes some patients to feel embarrassed or shameful, prompting them not to disclose any information. b. Hypersexuality did not manifest in the same way among different patients but did appear to overlap across many neurological disorders. Specifically, there was a notable difference in the manifestations of patients with Parkinson’s disease and dementia. Hypersexuality in Parkinson’s disease was characterized by sexual compulsivity while hypersexuality in dementia was characterized by sexual disinhibition, although there was an overlap in some characteristics. c. Hypersexuality did negatively impact areas of patient and carers’ daily living, including marital life, family life, social life, health, finances, self-confidence, and quality of life. Specifically, carers appeared very distressed and in despair because of their partners’ hypersexuality. The carers’ difficulties with coping suggested that they might suffer as much as the patients themselves, if not more because there is no question of insight for the carers as in the case of the patients. iii d. Although cultures and societies have evolved and become more tolerant, the taboos regarding sex are so deep-rooted in that their effects can still be observed in present day and were observed in the patients and carers who took part in the study. This sexual stigma seemed to impede patients/carers’ ability to access bodies of help for the hypersexuality, perpetuating their suffering. e. The participants expressed their discontent with the services, or lack thereof, that were provided to them regarding the hypersexuality. Professional help-seeking barriers may stem from the stigma associated with sex and the difficulties associated with the discussion of such a sensitive topic for the patients and carers as well as the health professionals. The results showed that neither the patients nor carers were getting the adequate and necessary information and help for the newly- developed hypersexuality. f. Many different options for management of hypersexuality were reported in the literature. Most commonly, pharmacological treatment modalities were used: implicated medications believed to contribute to the hypersexuality were reduced/ceased and/or new medication was added to the patients’ regimen. There was an evident lack, however, in interventional studies assessing psychological/behavioural management options of the symptoms and consequences of hypersexuality. The available literature on hypersexuality in neurological disorders will benefit from this thesis as it is the only available in-depth examination. This thesis makes ten contributions: 1. Systematic review examining prevalence, clinical phenomenology, and ameliorating management options of hypersexuality in neurological disorders. 2. Systematic investigation of phenomenology and impact of hypersexuality in patients with neurological disorders and their carers using both quantitative and qualitative methods. 3. Discussion and development of profile of patients with ‘insight’ into hypersexuality. 4. Inclusion of carers in examination of hypersexuality and its effects, as well as in consideration of feasible psychological interventions. 5. Triangulation of patient and carer accounts of hypersexuality. 6. New semi-structured interview schedules for assessment of hypersexuality developed for hypersexual patients with neurological disorders and their carers. 7. Website as a psychoeducational tool for patients with neurological disorders and their carers providing contact details. 8. Recommended pathways for management of symptoms and effects of hypersexuality for health professionals and clinical researchers to consult. 9. Addressing the challenges associated with the discussion of sex in the neurological disorder setting. 10. Highlighting the possible link between background psychology and psychological side-effects of medications. iv Impact statement The insight and knowledge gained in this thesis has implications both inside and outside academia. Although these implications are addressed at the end of each chapter, the most notable are as follows: Inside academia, one might consider: ▪ The potential benefits of including only a small sample size when tackling an issue as sensitive as hypersexuality to grasp the nature and severity of the issue. ▪ Exploring other recruitment methods that could guarantee a higher sample size such as the use of radio and social media to inform people of potential studies, as was suggested by one of the participants in the study, or providing study leaflets to every patient and carer attending clinics. Home visits could also be of benefit. ▪ Multi-centre studies to further ensure substantial sample size, potentially benefiting prevalence studies, which are inconsistent. ▪ Developing a sensitive, standardised hypersexuality-specific tools to be used across all neurological disorders that would make it easier to assess prevalence and/or phenomenology, and may consequently make it simpler to compare between neurological disorders to create a more holistic view of hypersexuality. ▪ Conducting interventional studies testing the effectiveness of management options on the symptoms and effects of hypersexuality, separate from other impulse control disorders. ▪ Conducting studies to compare the manifestations and impact of hypersexuality within neurological disorders, such as in dementia between frontotemporal dementia and Alzheimer’s disease, and between neurological disorders, such as between Parkinson’s disease, dementia, and epilepsy. Such studies could be beneficial as they might uncover distinctions and patterns that have yet to be uncovered. ▪ Exploring the significance of past experiences and how they affect the nature in which the hypersexuality develops, as is discussed in the findings. ▪ Not disregarding carers in any assessment of hypersexuality as they can often provide more information than the patients. ▪ Conducting studies investigating the professional help-seeking barriers and possibly involving general practitioners and consultants and considering reasons why they do not broach the subject. ▪ Conducting studies testing the recommended pathways for improvement, outlined in this thesis. Outside academia, health professionals might consider: ▪ Informing patients and their carers of the possibility of developing hypersexuality and its relationship to the neurological disorder. Lack of information might have negative consequences on the patients’ lives and the lives of those around them. ▪ Educating themselves about hypersexuality and the negative impact it has in order to then educate the patients and their carers/families. Perhaps in doing so (as well as having appropriate communication
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