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P18. Sexuality and relationships

Detailed Programme, abstracts and presentations

P18.1. Sexual behaviour: social perceptions on stigma and discrimination for individuals with dementia

Sue Phillips

Social stigmatisation and discrimination due to the perceived sense of loss of social skills, thought and self-agency, permeates the lives of individuals with dementia and impacts upon their sexuality in different ways. Individuals with dementia experience changes in cognition and judgement, and the expression of their sexuality may result in behaviours that are challenging to manage in health care or community environments.

Nevertheless, whilst individuals without dementia are usually homogenous in their accepted right to practise and exhibit their own sexuality, the restrictions placed upon individuals with dementia in exercising their sexuality is a form of ‘anomie’ or mismatching of societal perceived norms, that is that once someone has a diagnosis of dementia they should be considered asexual and expected to become celibate.

This loss of personal power over their bodies and the denial of emotional physical closeness goes against the current personalisation agenda, which is all about putting the individual with dementia at the centre of the process of remaining in control of their lives for as long as possible. Intimacy, sexuality and sexual behaviours remain some of the most sensitive and controversial health care issues in dementia, which is both functional and organic in its process and progression.

This paper questions why society is so afraid of individuals with dementia still possessing a sexual libido, why it is considered ‘wrong’ to exercise this sexuality, and how the Mental Capacity Act (2005) can assist individuals with dementia in asserting their right to sexuality.

P18.2. Can dementia interfere with a couple’s sexual intimacy? Current issues caregivers have to cope with.

Tsatali M., Karagiannidou M., Tsolaki M.

Introduction Despite the general reduction in sexual needs with ageing, human beings have sexual needs which are lifelong. It is well known that sexuality can be altered during dementia and lead to behavioural disturbances. Sexually inappropriate behaviours (ISB) are one of the most difficult behavioirs to manage for both informal and formal caregivers. Healthcare providers, included those serving in the community, must be educated to manage this condition. A lack of policies regarding sexual issues and a lack of in-service training in situations result in caregivers experiencing difficulty with the sexual issues faced by patients. It is essential to develop strategies which are consistent with culture and institutional philosophy. Through the understanding of sexual expression and its influencing factors among residents with dementia, caregivers can develop a care plan that allows residents to express appropriate sexual behavior. Whilst ISB is reported less frequently compared to other behavioural disturbances, it has a significant and disruptive role in the relationship between patients and caregivers. In order to overcome these difficulties which impede patient’s care, we have to define and quantify ISB. It is also very important to inform and educate caregivers and staff members in order for them to manage more effectively such behaviours and to sensitize society starting with appropriate clinical assessment and identification.

Materials and Methods The sample consists of 74 caregivers, 50 women and 24 men, between 60 and 85 years old, who have visited the Greek Alzheimer Association of Thessaloniki. The study started in January and finished in November 2010.

All subjects were examined by means of a questionnaire (Sexual Satisfaction and Experience Questionnaire), MMSE and medical history, current medication and demographic data. The results were analyzed by the SPSS 16 and specifically the parametric statistical method of t-test.

Results A statistical significant difference was found of the whole sexual function the previous year (p<0,001). The participants’ sexual function during the last month was decreased and strongly depended on their gender (p<0,003). Men were more sexually active than women, while those who were married had much more sexual action compared to the participants who were living alone. Alcohol use and smoking did not affect sexual function and desire during the last month. In cases where participants were satisfied with their sexual life during their early years, there were more possibilities to maintain their sexual ability and desire as a statistically significant difference was found between the early contentment from sexual function and desire and the current (p<0,001).

Discussion The current presentation indicates caregivers’ needs and problems they have to overcome relating to their sexual function, while demonstrates that sexual relationships can find new balances and expressions because dementia does not always put an end to a couple’s sexual relationship even if it is reduced. Each caregiver has to be adequately informed and discuss possible worries or find answers relating to sexual issues.

P18.3. Dementia, relationships and caregiving in minority ethnic communities

Julia Botsford

Aim: This paper reports on a study examining the experiences of partners of people with dementia in two minority ethnic communities in the UK.

Background: Dementia is a global health concern (Alzheimer’s Disease International, 2009). Numbers of people with dementia are set to increase over the next decades, and within this an increasing ethnic diversity is anticipated (Lievesley, 2010). In order to be able to provide appropriate support to families affected by dementia, nurses need to be able to recognise and respond to needs arising from cultural diversity.

Ethnic background appears to be significant in regard to how people view the changes associated with dementia (Hinton et al., 2005). It also appears to be significant in relation to the ways in which they engage with diagnostic and support services and organise care (Janevic & Connell, 2001). However, there is still a relative lack of evidence around the particular experiences of many minority groups.

Aim: The aim of the paper is to report on a study examining the experiences of Greek Cypriot and African Caribbean partners of people with dementia.

Methodology: Using a grounded theory approach, a total of 43 in-depth interviews were conducted with seven Greek Cypriot and six African Caribbean partners of people with dementia. In addition, further interviews were conducted with people not directly affected by dementia, in order to explore prevailing knowledge and attitudes.

Findings and Recommendations: The study findings identified that irrespective of ethnicity, partners of people with dementia were engaged in an ongoing process of ‘redefining relationships’. Greek Cypriot partners tended to emphasise family relationships whilst African Caribbean partners tended to view themselves primarily as an individual or as part of a couple. Attitudes and preferences around care provision varied between individuals but cultural factors were found to be significant in regard to how family and formal care services were accessed and involved. The findings have implications for care services, which will be discussed.

References

Alzheimer’s Disease International (2009) The International Federation of Alzheimer’s Disease and Related Disorders Societies, Inc (2009) World Alzheimer Report. [Online]. Available at: http://www.alz.co.uk/research/worldreport/ (Accessed: 26 July 2010).

Hinton, L., Franz, C., Yeo, G. & Levkoff, S. (2005) 'Conceptions of dementia in a multiethnic sample of family caregivers', Journal of the American Geriatrics Society, 53, pp. 1405-1410.

Janevic, M. & Connell, C. (2001) 'Racial, Ethnic, and Cultural Differences in the Dementia Caregiving Experience: Recent Findings', The Gerontologist, 41 (3), pp. 334-347.

Lievesley, N. (2010) The Future Ageing of the Ethnic Minority Population of England and Wales. London: Centre for Policy on Ageing and Runnymede Trust [Online]. Available at: www.cpa.org.uk/information/reviews/thefutureageingoftheethnicminoritypopulationofenglandandwales.pdf (Accessed: 22 November 2010)

P18.4. Expression of sexuality, dementia and older people.

Deirdre Fetherstonhaugh, Michael Bauer, Linda McAuliffe, Rhonda Nay

The new discourse on ageing positively confronts traditional boundaries and mores on what it means to grow old by incorporating the expression of one's sexuality as a fundamental component of successful ageing. However, despite these new insights the stereotype of the sexless older person has retained a prominent position in society and amongst health professionals and carers of people living in aged care facilities. Not least of all influencing this stereotype is the way in which sexuality is portrayed in the media.

It is generally accepted that older people with dementia living in residential aged care are regarded as a 'vulnerable' population. However, the perceived need to protect this 'vulnerable' population, together with what may be described as judgemental attitudes can lead to: paternalistic approaches (by both staff and families) to what is in their best interests; restriction of their activities; and curtailment of their right to take risks.

While enabling people with dementia to express their sexuality 'appropriately' is often seen as fraught with difficulties it is something that needs to be addressed. This paper will discuss sexuality and older people and report on the findings of research conducted in Victoria, Australia.

P18.5. Anticipating the possibility of developing dementia: perspectives of older transgender / intersex persons

Susan H. McFadden, Scott Frankowski, Tarynn Witten

This paper (or poster) reports on 141 persons age 61 and older who completed an online survey of transgender and intersex identified individuals designed to investigate their views of aging well and their fears and concerns about aging, including the possibility of developing dementia and becoming dependent on others. Persons from all regions of the USA, as well as Canada, Sweden, Ireland, Denmark, Australia, Brazil, and New Zealand participated. A 2x2 factorial ANOVA showed that there was a significant interaction effect on the concern that participants had for developing dementia based on the term that participants used to describe themselves to others (heterosexual, n = 21; transgender, n = 41; transsexual, n = 29) and whether or not they had a chronic illness, F(2, 85) = 4.54, p = .013. Those who identified as transsexual reported being more concerned about developing dementia if they had a chronic illness (n = 9, M = 3.00, SD = .87) than if they did not have a chronic illness (n = 20, M = 4.15, SD = .93), t(27) = 3.14, p = .004. There were no significant differences in concern about developing dementia connected with having a chronic illness among those who identified as heterosexual or transgender. That there was a marginally significant effect on participants' concern about developing dementia depending upon whether they identified as heterosexual or transgender is in line with our theory of multiple stigmas which states that having one stigmatizing identity can activate concern regarding other stigmas (i.e. the stigma associated with dementia and dependency). Those identifying as heterosexual may have more degrees of freedom in their response to the possibility of another stigma because they are outwardly identifying to others in a way in which they may not experience stigma associated with their gender or sexual identity. However, those identifying to others as transgender, and dealing with the societal stigma associated with deviation of the gender or sexual norm, may then experience more concern at the possibility of dealing with additional sources of stigma.

NVIVO 8 software along with Interpretive Phenomenological Analysis were employed to analyze narrative responses to questions about fears and concerns about aging, needing and giving care, as well as how being GLBTIQ-identified prepared participants for aging, factors contributing to successful aging, and wisdom they wish to pass on to others. Fears and concerns centered on interactions with judgmental healthcare providers, finding accepting long-term care residences, and developing progressive forgetfulness; 40 persons claimed to have no fears about aging. Overall, the narrative data revealed resilience that was not captured in the quantitative data. Many of these individuals strongly asserted a sense of self-acceptance, support from the GLBTIQ community, and satisfaction with life despite the looming possibility of dementia and dependency.

 

 
 

Last Updated: Wednesday 26 October 2011

 

 
  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene
 
 

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