'I don't know if you want to know this': Carers' understandings of intimacy in long-term relationships when one partner has dementia

This article explores experiences of relational intimacy (including sexual intimacy) in long- term relationships when one partner has dementia. An emerging body of research focuses on living with dementia, but work on relationships between people with dementia and their family and loved ones tends to focus on understanding the experience of caring and on constructs like ‘care burden’ (Etters, Goodall and Harrison 2008: 423). Research concerned with the lived experience of relationships themselves is less frequent, and very little published work focuses experiences of sex and intimacy. This qualitative study explores how six participants experience their intimate relationships with their partners with dementia. Semi-structured interviews provided a rich source of data which were analysed using interpretive phenomenological analysis. Three master themes emerged from our analysis: a) everydayness, b) absent presence, and c) I don’t know if you want to know this. Participants explored how living with dementia constructed specific, everyday relational challenges, and disrupted everyday intimacies. Intimacy, including sexual intimacy, remains an important element of older couple relationships. Relational experiences present specific and difficult to articulate experiences for the partners of people living with dementia – particularly experiences related to sex and sexuality. Representations of older adults (particularly older adults with a long term illness) as relatively asexual beings can make elements of these relational challenges particularly difficult to express

Life Story Sharing: A Therapeuitic Intervention in Palliative Care

This chapter presents a personal reflection by Sharing Stories for Welbeing (SS4WB) workshop facilitator and programme founder Miranda Quinney with observational input from Alison Ward and Jane Youell of the University of Northampton following the University’s evaluation of the programme in May 2015. SS4WB provides facilitated storytelling sessions in palliative care. Workshops foster life-story discussions which participants share with the group, that are delivered in a non-linear style and are based on themed topics. Groups are supported by hospice staff, who provide both pastoral and clinical care. Informal observational feedback suggested that the potential benefits for participants were improved self-esteem, feelings of being valued and of being listened to at a time of personal distress. The running of new SS4WB sessions at Watford’s Peace Hospice Care gave the opportunity to conduct a formal evaluation and to understand the potential value of participation. The evaluation was conducted over five weekly sessions between May and June 2015. Four broad evaluation themes emerged: ‘pleasure’; ‘what makes you, you’; ‘more than just a patient’; and ‘benefits beyond the group’.1 Participants reported enjoyment and felt a sense of autonomy and control in deciding on the stories shared.2 Sessions provided an opportunity for social engagement, giving a sense of togetherness and were a means to explore the participants’ sense of self and feelings of being valued as a person, not a patient. The telling of biographical reminiscences was reported to bring positive reminders of changing times and lived experiences. Workshop engagement also led some participants to experience improved confidence and reduced social isolation, as evidenced through staff and family views and participation in new activities. SS4WB enables people in palliative care to share their life-stories in a supportive and safe environment. Participation can have positive outcomes fostering choice in the stories shared which then engenders a sense of autonomy and control, reminiscences can also bring feelings of value and self-esteem

Journey of ethics – Conducting collaborative research with people with dementia

This paper explores some of the ethical considerations of working collaboratively with people with dementia within research. Examples of good practice and learning are drawn from three doctoral research studies which focus on the research relationship with participants and gatekeepers, the importance of setting and access, the power relations within the research and ways in which people with dementia can be supported to be active and have a voice in research. This sits within an ethical framework of principalist ethics, ethics of care and virtue ethics to guide not only how research is planned ethically and with consideration of participants, but also how this can support decisions made in situ. The aim is to provide learning for early career researchers going into this field of research to support their decisions in planning and conducting research with people with dementia as active collaborators

Using participatory research to co-produce an education and training e-resource to support care home staff to meet the sexuality, intimacy and relationship needs of care home residents with and without dementia

AimTo present the methodological approach and research methods chosen in a research study designed to enable the collaborative creation of an education and training e-resource designed to facilitate and support care home staff to address the sexuality, intimacy and relationship needs of older care home residents.DesignCo-production using community-based participatory approach.MethodsFour participatory workshops with care home staff, residents and their significant others.ResultsWorkshops 1 and 2 identified and developed real-world case scenarios related to sexuality, intimacy and relationship needs and identified care staff training needs in this area. Then workshop 3 provided valuable feedback on the prototype training e-resource, and the final workshop identified care home staff engagement with and implementation of the e-resource in practice.ConclusionThe findings provide evidence that using participatory approaches, such as co-production, to develop education and training resources in a sensitive subject area with care home residents, significant others, carers and care home staff, was a useful approach in engaging a vulnerable population group, in a sensitive area. However, this approach is not without challenges in care home communities

The design, delivery and impact of a Tier 1 Dementia Awareness training package delivered in the Thames Valley Region in England, UK

Objectives: As part of Health Education England’s (HEE) response to the 2014 Mandate, Health Education England Thames Valley (HEETV) commissioned four universities to undertake a multi-phase project. The University of West London, Oxford Brookes University, University of Bedfordshire and University of Northampton became partners in the Dementia Academic Action Group (DAAG). Phase 1 of the project consisted of a Scoping Review, reported through a poster at the 2016 ADI. This poster will focus on Phase 2 (design and delivery of the training package) and Phase 3 (evaluation of the impact of training). The DAAG has developed evidence based and quality assured training package based on recognised National UK standards such as Skills for Health Dementia Training Standards (2015). It has also been validated by the Alzheimer Society as meeting the standards for Dementia Friend’s training, and participants are eligible to register as a Dementia Friend on completion of the training. The package is mostly delivered in a 2 hour session, but can also be taken through 8 separate units of learning. A total of 1471 people attended the standard 2 hour training, delivered through 84 different sessions in 34 different venues across the region. Attendees represented a wide range of professionals, from porters, cooks and cleaners to nurses, pharmacists, therapists and doctors. Some sessions were uni- professional but, most had a professionally mixed audience. The number of trainees per session varied from 3 to 112. Subsequent to the training, quantitative and qualitative data was collected through evaluation questionnaires, combined with follow up online questionnaires and individual face to face or telephone interviews 6 weeks after the event. Over 85% of respondents to the follow up questionnaires and interviews reported improved skills, attitudes and confidence in working with people with dementia following the training. 70.2% indicated that they had been able to transfer some of what they had learned in the training to practice. Sustainability was ensured through the development of a trainers guide and ‘train the trainers’ events. The Tier 1 dementia awareness training package is now available for free from the Health Education England website, and it’s ongoing use is subject to continuing evaluation

Carer and staff perceptions of end-of-life care provision: case of a hospice-at-home service

People requiring palliative care should have their needs met by services acting in accordance with their wishes. A hospice in the south of England provides such care via a 24/7 hospice at home service. This study aimed to establish how a nurse-led night service supported patients and family carers to remain at home and avoid hospital admissions. Semi-structured interviews were carried out with family carers (n=38) and hospice-at-home staff (n=9). Through night-time phone calls and visits, family carers felt supported by specialist hospice staff whereby only appropriate hospital admission was facilitated. Staff provided mediation between family carer and other services enabling more integrated care and support to remain at home. A hospice-at-home night service can prevent unnecessary hospital admissions and meet patient wishes through specialist care at home

Incorporating cancer risk information into general practice: a qualitative study using focus groups with health professionals.

BACKGROUND: It is estimated that approximately 40% of all cases of cancer are attributable to lifestyle factors. Providing people with personalised information about their future risk of cancer may help promote behaviour change. AIM: To explore the views of health professionals on incorporating personalised cancer risk information, based on lifestyle factors, into general practice. DESIGN AND SETTING: Qualitative study using data from six focus groups with a total of 24 general practice health professionals from the NHS Nene Clinical Commissioning Group in England. METHOD: The focus groups were guided by a schedule covering current provision of lifestyle advice relating to cancer and views on incorporating personalised cancer risk information. Data were audiotaped, transcribed verbatim, and then analysed using thematic analysis. RESULTS: Providing lifestyle advice was viewed as a core activity within general practice but the influence of lifestyle on cancer risk was rarely discussed. The word 'cancer' was seen as a potentially powerful motivator for lifestyle change but the fact that it could generate health anxiety was also recognised. Most focus group participants felt that a numerical risk estimate was more likely to influence behaviour than generic advice. All felt that general practice should provide this information, but there was a clear need for additional resources for it to be offered widely. CONCLUSION: Study participants were in support of providing personalised cancer risk information in general practice. The findings highlight a number of potential benefits and challenges that will inform the future development of interventions in general practice to promote behaviour change for cancer prevention.This study was funded by an innovation grant from the Cancer Research UK — BUPA Foundation Fund (ref: C55650/A20818). Juliet Usher-Smith is supported by a National Institute for Health Research Clinical Lectureship. Barbora Silarova was supported by the Medical Research Council [MC_UU_12015/4]

Health and wellbeing amongst older people research in Northamptonshire

The Ageing Research Centre of the University of Northampton (2014-current), in collaboration with the East Midlands Research into Ageing Network (EMRAN) is pleased to compile this brochure on research activity associated with older people across the county of Northamptonshire. This provides a comprehensive overview of activity that is relevant and of value to practice, identifying research outcomes that have real significance to age-related health and wellbeing. The brochure provides a summary of research activity over the last five years from academic, clinical and professional colleagues and demonstrates cross sector networks of collaboration around the common agenda of aging. Such collaboration will enhance the capacity of research understanding across the county and provide information and support for the needs of older people, their families and carers. The translation of research outcomes into practice is essential if we are to promote wellness, independence and healthy aging within the county and beyond and I would like to thank all contributors for their commitment and hard work in the production of this brochure