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 newlydeveloped 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 skills), they can attempt to normalise hypersexuality, explain it, and provide reassurance, if nothing else. This would help alleviate the patient and carer burden of living with hypersexuality and consequently facilitate better help-seeking behaviour. ▪▪Not forgetting to routinely ask patients and their carers about such sexual changes to allow them to keep a close eye on its development and/or progression. The need to also include carers in the discussion of hypersexuality, especially since some patients may choose not to disclose information about the changes in their sexuality because of the sensitive nature of the issue or may not realise their sexual changes to begin with. That the recommended pathways presented in the thesis should only act as starting points. Further research into hypersexuality will allow for the improvement of these pathways. ▪vOutside academia, carers might consider: ▪Educating themselves about hypersexuality and understanding that it is beyond the patients’ control. This does not mean that carers must accept however the hypersexuality manifests, but rather to know that they are able access bodies of help that can provide support and advice if needed. Outside academia, society might consider: ▪Taking a step back and revaluating stigmatised beliefs. Although this is difficult considering the deep-rooted stigmas associated with sex, it is not impossible. vi Acknowledgements I would like to thank my three supervisors for creating a home for me away from home. I would like to thank Dr. Jalesh Panicker, my primary supervisor, for the constant support, invaluable advice, and immense knowledge he has bestowed upon me during the last five years. I was thankful when he took me on as a naïve MSc student, thankful when he took me on as his first-ever PhD student, and ever more thankful today. Despite the many challenges we faced together throughout the process of this PhD, he never shied away from challenging me himself and getting me right back on track when I was feeling lost. I would like to thank him for believing in me. I would like to thank Dr. Jennifer Foley, one of my secondary supervisors for her guidance, advice, support, and most of all, friendship. I want to thank her for listening to me, sometimes at the end of very long working days. I want to thank her for taking me under her wing and being excited about this research. I want to thank her for always pointing out things in my thesis that I had not thought of. She made me more critical of a researcher, possibly without knowing it. It was very refreshing as a student to have a supervisor provide unwavering help and support in matters of study and life. I would like to thank Dr. Caroline Selai, my other secondary supervisor, who has been a breath of fresh air amidst plenty of stress and challenges. For the past five years, she has never failed to provide uplifting advice and a smile that always set me at ease. I want to thank her for soothing my anxieties and always making me feel safe by reminding me of the end goal and always providing me words of encouragement. I want to especially thank her for holding my hand (literally) at the beginning of the ethics committee meeting, because she had felt my nerves. She has been holding my hand ever since (figuratively). I would like to thank Professor Tom Warner, Professor Jason Warren, Dr. Pedro Barbosa, Dr. Patricia Limousin, Cathee Magee, Jill Walton, Martin Samuel and the rest of the team at Edgware Community Hospital, and Parkinson’s UK for appreciating the importance of this research and helping recruit participants despite the many challenges we faced. I would especially like to thank Dr. Barbosa for allowing me to sit in with him during his clinics to maximize recruitment and for being the second reviewer in the systematic review, as well as always being available to discuss suggestions and results. I want to thank him for helping me without ever asking for anything in return. I will be forever grateful for making my PhD process a bit easier. I would especially like to thank Professor Jason Warren for helping develop the screening questionnaire for carers, although it is a shame it was not used in the way we had hoped. I would like to thank Mr. Fahed Hassan, the perfect hybrid of statistician and psychologist I did not know existed. My experience with statisticians has not always been good and, therefore, it was a blessing to have met him. I want to thank him for helping me master qualitative analysis, a feat of which I was apprehensive, and making it a pleasurable experience. I want to thank him for spending hours a day with me when I needed it, providing help with coding the transcripts, checking my work, and telling me how it can be improved. I would like to thank Lynda Joeman for helping me realise where my errors in the qualitative analysis were and helped me fix them as required by my examiners. I would like to thank her for spending as much time as she did looking through the interviews and assessing my process of analysis. I would like to thank Dr. Gladys Honein for providing direction for the qualitative analysis as was required by my examiners. I would like to thank her for explaining the importance of epistemology and addressing this in research. vii I would like to thank Ms. Kate Brunskill for helping develop a comprehensive list of key words and develop the search syntax necessary for the systematic review. I would like to thank Mr. Mohamad Nasser who helped develop the website. He helped deliver the website that we hope will provide some comfort to patients and carers affected by hypersexuality. I want to thank him for coping with my endless badgering in the middle of the night, even when it was something as small as a missing comma on the page. I would like to thank the patients and carers who kindly took part in the study and trusted me enough to share a huge part of their lives with me. I want to thank them for trusting in me, an advocate for their needs and a possible soother of their fears. This research would not exist without them. I would like to thank UCL for making me part of an elite family, believing in my abilities, and taking me on as a student. I would like to thank my sweet heart, Hisham Raad, who heard me nag, whine, and cry about this thesis and still loved me through it all. I want to thank him for reading most of it (even though I made him). I want to thank him for believing in me, taking pride in my accomplishments, and loving me through the stress of completing this PhD. I would like to thank my two beautiful sisters for being there for me, providing comic relief, and making me grateful every day for their presence. Finally, I want to thank my out-of-this-world amazing, priceless parents. I remember when I was young, my parents used to seat my sisters and I around the dinner table, sit with us, and make sure we completed our homework, without fault. They put in more hours than I could count, more laughter than I could measure, more reprimands than I would want to remember, and more encouragement than I ever dreamed possible. I want to thank them for pushing me, even at times when I hated (not really) them for it. I want to thank them for believing in me, never failing to see my abilities, and loving me to success. If it was not for my mother and father, I would not have been able to get this far. I want to thank them for worrying about me, although at times I did not understand. I want to thank them for getting angry at me when I could not see the end goal as clearly as they could. It got me to a point where I am writing the acknowledgements section of my PhD… something I never imagined possible. I want to thank them for passing the DNA of the smartest, most generous, and most driven two people onto me. I hope I deserve it. I want to thank them for loving me in the same way even being thousands of miles apart. I want to thank them for being there for me at every turn, through the tears, the smiles, and the disagreements. I want to thank them for being my best friends in a world where friendships are fickle and fleeting. I want to thank them for being themselves… two people that I could not possibly thank enough and could not love more. After spending almost a year perfecting this thesis, I was no longer able to spot the mistakes because my eyes were starting to fail me so I would especially like to thank my father, an orthopaedic surgeon, for reading this thesis in its entirety and helping me edit/proofread (from the viewpoint of a health professional) despite his super busy schedule. viii to mama and baba ix Table of Contents Declaration of originality.......................................................................................................................................ii Abstract................................................................................................................................................................. iii Impact statement....................................................................................................................................................v Acknowledgements...............................................................................................................................................vii Dedication ..............................................................................................................................................................ix Table of contents ....................................................................................................................................................x List of tables.........................................................................................................................................................xvi List of figures......................................................................................................................................................xvii List of abbreviations ........................................................................................................................................ xviii Quotes ................................................................................................................................................................xxi Important note....................................................................................................................................................xxii Chapter 1 - Introduction .......................................................................................................................................1 1.1 Background.................................................................................................................................................1 1.1.1 Sexuality ...........................................................................................................................................1 1.1.2 Sexual dysfunction............................................................................................................................1 1.1.3 Hypersexuality..................................................................................................................................2 1.1.4 Hypersexuality in neurological disorders .........................................................................................3 1.1.5 Hypersexuality and sex addiction.....................................................................................................4 1.1.6 Dopamine and sexuality ...................................................................................................................5 1.1.7 Dopamine and Parkinson’s disease ..................................................................................................6 1.1.8 Impulse control disorders and Parkinson’s disease ..........................................................................6 1.1.9 Hypersexuality and Parkinson’s disease...........................................................................................7 1.1.10 Management and Parkinson’s disease ............................................................................................8 1.1.11 Hypersexuality and dementia .......................................................................................................10 1.1.12 Management and dementia ...........................................................................................................11 1.1.13 Hypersexuality in other neurological disorders............................................................................12 1.2 Thesis development ..................................................................................................................................13 1.2.1 Overview.........................................................................................................................................13 1.2.2 Stage 1: Narrative literature review................................................................................................13 1.2.3 Stage 2: Systematic review.............................................................................................................13 1.2.4 Stage 3: Systematic investigation (main empirical study) .............................................................14 1.2.5 Stage 4: Investigation/development of psychological/behavioural management options ..............14 1.3 Thesis structure and aims..........................................................................................................................14 1.4 Ethics.........................................................................................................................................................15 1.5 References.................................................................................................................................................16

Hypersexuality in Neurological Disorders

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