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Parallel Session P2 - Relationships, communication and sexuality

Detailed Programme and abstracts

Friday, 1 October: 11.00-12.00 (Blue Room)

P2.1. Communicating with Alzheimer Patients

Razvan Ioan Trascu1, Luiza Spiru1

1 Ana Aslan International Academy of Aging, Romania, email:,

Background: Diagnosing Alzheimer’s disease is a long-lasting process, due to a flamboyant variability of initial symptoms (i.e. memory problems, speech difficulties, behavioral changes). Patients are usually either unaware of their difficulties or attempting to conceal them. Complete diagnostic workups usually lead to an implacable diagnostic, forcing both caregivers (family) and patients to face numerous uncertainties.

Method: We performed a systematic overview of medical literature (PubMed search, disclos* OR communic* NOT communicate AND Alzheimer), selecting of the 516 resulting titles those papers focused on doctor/patient and doctor/caregiver communication issues. We further summarized the recommendations and gold-practices identified by various authors, contracting them into key messages (i.e. ‘frontal, eye-contact’).

Results: Specific communication requirements were identified for effective collaboration between (1) physician and patient, (2) physician and patient’s caregivers/family and (3) caregivers/family and patient. A minimal set of communication skills and predictable courses of action was further developed, depending on (a) best practices and (b) recommended practices.

Conclusions: Although communicating with people with Alzheimer is difficult, quite often the communication barriers are mainly due to an inaccurate perception of the disease and of patient limitations and disabilities. Understanding the mechanisms involved and acquiring certain interpersonal habits may significantly improve communication effectiveness, particularly in mild and moderate AD. A better understanding of the leading causes of miscommunication should overcome most communication barriers.

P2.2. Attending to communication difficulties between people with dementia and family carers: A relationship-centred approach.

Damian Murphy, Holgate Villas, 22 Holgate Road, York YO24 4AB – Education and Development Alzheimer’s Society, UK.

Since beginning work in the field of dementia care, I have become increasingly concerned by relationship breakdown between people with dementia and their family carers caused by what I perceived to be unattended communication difficulties, often resulting in people questioning the validity of decades of marriage. I have noticed two key factors that tend to perpetuate this situation – Firstly the majority of current services tend to separate people for a while and send them back to the same unattended antagonisms and secondly, the lack of effective joint work with both members of the caring partnership. I am increasingly convinced that service provision cannot focus exclusively on one partner or gain only one perspective in the caring relationship because of the interdependent nature of that relationship.

The first part of my presentation will report on the findings of a four-session series of semi-structured interviews entitled ‘The Getting Along Project’, explored with three care dyads over a period of six weeks. This project had three aims. First, to enable dyads to broach subjects they had not been able to discuss; second, to facilitate conversation on an equal footing for both participants and third, to establish a framework to carry out relationship-centred work.

The second part of my presentation will cover the aims, content and initial outcomes of a training programme, borne of that work and piloted and delivered across a front line dementia care workforce of up to 600 people throughout the East Midlands area of the UK in my role within Alzheimer’s Society Education and Development.

I believe it is vitally important to enhance the quality and type of support that front line community dementia care services currently offer to families living with the presence of a dementia. Front line staff need to be equipped to identify unattended antagonisms within relationships and to be confident and competent to respond to these. There is an urgent need to promote a broader understanding of both sides of the caregiving relationship.

Keywords: Dementia; Communication; Relationship-centre care.

P2.3. Feelings of family caregivers towards the cared-for person with dementia – A micro-analytic approach

Anja K. Leist1, Catherine Kaiser-Hylla2, Dieter Ferring3

1 University of Luxembourg, Faculté des Lettres, des Sciences Humaines, des Arts et des Sciences de l'Education, Unité de Recherche INSIDE, Luxembourg,

2University of Applied Sciences, Department of Social Work, Koblenz, Germany,

3 University of Luxembourg, Faculté des Lettres, des Sciences Humaines, des Arts et des Sciences de l'Education, Unité de Recherche INSIDE, Luxembourg,

Objectives. In the last decade, much research has been dedicated to, firstly, investigating the burden that family caregivers of persons with dementia are facing and, secondly, how this burden (i.e., caregiver suffering) influences the relationship between the family caregiver and the cared-for person. However, feelings towards the cared-for person are often investigated by globally asking about the perceived burden of caregiving. Such an approach might certainly not capture the feelings of caregivers towards the cared-for person in their full complexity. Therefore, the present study sought to investigate the subjective experiences of family caregivers in a more detailed and qualitative approach within two case studies.

Method. A series of interviews with a 75-year old man and a 72-year old woman, both caregiving for their spouse, were conducted. The interviews were analysed with qualitative content analysis. Quantitative measures for perceived burden of life situation, social satisfaction, and well-being reported by the interviewees were used to validate the reports.

Results. Feelings toward the cared-for spouse were complex and differed to a great extent between the two interviewees’ reports. The female caregiver reported on own physical symptoms due to constant care, but primarily expressed gratitude for “good days” of her husband. The male caregiver, in contrast, expressed anger and resignation, and related these feelings to behaviors and demands of his spouse as well as to own unrealizable desires (e.g., going on vacation). Similarities between the caregivers’ experiences emerged in both reporting (1) feelings of burden due to caregiving, (2) structuring daily routines around the needs of their spouse, but also (3) feelings of satisfaction by doing something good for the cared-for spouse.

Discussion. The study shows that, firstly, the subjective experiences of family caregivers differ widely between individuals and, secondly, that caregiver suffering does not only manifest itself in different symptoms, but is also attributed to different causes by the caregivers. On a policymaking level as well as on the level of care management, it is therefore essential to design and implement personalized interventions that aim at reducing the specific physical and psychological stressors accompanying caregiving.

P2.4. Sexual function in dementia and related issues

Marianna Tsatali1, Vasileios Papaliagkas3, Magda Tsolaki1,2

1Greek Alzheimer’s Disease and Related Disorders Association, Greece,

1Greek Alzheimer’s Disease and Related Disorders Association, 23rd Department of Neurology, Aristotle University of Thessaloniki, Greece,

3 Department of Experimental Physiology, Medical School, Aristotle University of Thessaloniki, Greece,

Sexuality is a central human need beginning at birth and continuing throughout life, as human nature is in need of intimacy and love. Thus, sexual needs in the elderly are similar to those of younger people, although there are variations in frequency, intensity and mode of expression. Recent studies show that the fundamental psychosociological need for acceptance, tenderness, warmness and security does not disappear with age. Sexual activity in ageing primarily depends on the existence of a partnership, while sexual dysfunctions in ageing result from physical, psychological, and partner-related changes, as well as lifestyle factors. Older adults often have difficulty communicating sexual problems, concerns, and questions because of their conflicting attitudes and perceptions. So physicians need to be aware of the possibility of covert sexual dysfunctions, clear about their own attitudes and expectations to avoid stereotyping the elderly, and knowledgeable about pharmacological, organic and psychosocial bases of sexual problems in older patients. Chronic diseases can affect the sexual function, which is strongly related to overall satisfaction, and is necessary to be part of the overall assessment and treatment. As a result, neurodegenerative diseases may impact dramatically upon sexuality and its expression, influencing patients’ lives and their immediate environment. Alzheimer’s dementia is characterised by both cognitive and functional deficits in addition to a wide range of psychiatric disturbances, including behavioural and psychological problems and changes in sexual behaviour. During the first stages, sexual desire may either increase or decrease. Many patients may become hypersexual whereas others completely indifferent. Patients with dementia may become sexually disinhibited in relation to their cognitive deficits progress. Regarding inappropriate sexual behaviours (ISB), it may manifest as a clinical symptom in either verbal or physical form. Inappropriateness is defined as a vigorous sexual drive after the onset of dementia that interferes with normal activities of living or is pursued at inconvenient times and with unwilling partners.The physical inappropriate behaviour includes touching, fondling, disrobing and masturbation and affects caregivers, causing depression, burden, stress and affecting caregivers’ social life, morale and somatic health. These behaviours also may signal that the elderly individuals with dementia are distressed and because of a combination of inappropriate behaviors and loss of communication skills, these individuals may not receive adequate assessment or treatment. Moreover, dementia can cause changes in sexual intimacy and marital satisfaction. The subjective perception of burden by spouse caregivers is higher in women than in men and it is related to the dementia severity of their partners. High sexual activity was problematic to 75% of the female caregiver spouses. Caregivers evidenced adaptation and control, afflicted spouses tended to deny problems and had distorted perceptions of interactions with their caregiver spouses. This abstract tries to highlight these arising sexuality issues related to dementia through specific literature data and through our research upon sexual activity and desire among people with dementia, depressed and normal elderly. In particular, we tried to describe the factors which affect elders ability to have sex. Diagnosis which one has, according to our survey, has an impact on his/her sexual function but not in all types of dementia. It was found a statistical significance of the whole sexual function at the previous month between people with and without Alzheimer’s disease (AD), between elderly with Mild Cognitive Impairment (MCI) and AD and between MCI and AD, while the participants’ sexual function during the last month has been dependemt on their gender. Men were more sexually active in the three groups than women and sexual desire depended on previous sexual experiences according to women’s preferences, while this was not obvious among men. At that point we can observe clearly the differences in sexual life which need further research and discussion, as life expectancy is increasing and sexual function too.



Last Updated: Wednesday 03 November 2010