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P17. Carer support

Detailed Programme, abstracts and presentations

P17. Carer support (Saturday, 6 October, 8.30-10.00, Europa 5)

P17.1. Caring for a spouse/relative with dementia at home: male caregivers’ experiences

Ms. Siobhan Healy McGowan

The aim of this study was to explore the caring trajectory as experienced by male caregivers residing in the North West of Ireland caring for a spouse/relative with dementia. A non-experimental qualitative research design, namely descriptive/exploratory was utilised. A non-probability sampling method (purposeful sampling) was deployed to generate a sample of thirteen male carers. In-depth, qualitative interviews were used to generate data which was subsequently analysed using thematical analysis. Ethical approval was received from the local Research Ethics Committee. A theoretical framework that emerged from a grounded theory study on carers’ experiences was used to frame both data collection and analysis (Perry, 2002). The researcher evaluated the quality of data retrieved and established trustworthiness through the employment of the criteria outlined by Lincoln (1985) namely credibility, dependability, confirmability and transferability. The data revealed that male caregivers care in an insightful manner, striving at all times to maintain their spouses/relatives personhood. They require the assistance of a range of supports (informal & formal) to assist them achieve this goal. It also transpired that there is a crucial need to raise awareness of the presenting features of dementia in the general public both to aid early warning signs being acted on in a prompt manner by caregivers and ensure that members of the public respond appropriately to both persons with dementia and their caregivers. Obtaining an early diagnosis for a spouse/relative was essential in addition to obtaining timely appropriate information to facilitate caregivers in understanding and coping with the ongoing changes which occur in a person as the disease progresses. As a consequence of the emergent findings a number of recommendations have been advanced. General practitioners need to be better informed with regard to dementia. Consideration needs to be given by service managers to review current structures with the intent of creating a seamless system. This study has contributed to a better understanding of the male caregiver’s role in terms of becoming a carer and the actual process of caring. 

P17.2. The Impact of a Short-Term Telephone Based Psychological Intervention on Encouraging Family Caregivers to Identify their Needs for Support

Tanja Kalytta, Gabriele Wilz

Background: Telephone based interventions provide a new form of flexible support services. Being independent of time and space, they allow to address specific needs of family caregivers of people with dementia. A telephone based psychological intervention can be a low-threshold and efficient support service for family caregivers compared to conventional interventions such as support groups and personal counseling (Colantonio, Kositsky, Cohen & Vernich, 2001, Schopp, Demiris & Glueckauf, 2006).

Aims: The effect of a telephone based short-term intervention on identifying the needs of support and on using support services was examined in family caregivers of people with dementia. Another objective of the present study was to describe the patterns of utilization of support services by family caregivers of people with dementia in order to provide information on the needs of support.

Method: A rater-blind randomised, controlled trial with pre-treatment, post-treatment, and 6 months follow up design recruited 229 family caregivers of people with dementia. The outcome measures were changes in using social support services for family caregivers (including quantitative and qualitative data).

The short-term multi-component telephone based intervention aimed at developing individual problem solving skills, self-care needs, and as well as at preparing for the care situation and the utilization of support services. The intervention included: (1) an initial personal interview and (2) six telephone based sessions (one hour per session) over a three-month period.

Results: Considering high levels of caregiver strain, the low utilization rates highlight unmet needs for support services. Family caregivers who attended the telephone based intervention report raised awareness and understanding of their needs of support. The participation in the intervention program was significantly associated with changes in the use of social support.

Discussion: The findings demonstrate the urgency to identify the needs of support and confirm the importance of interventions for family caregivers of people with dementia.

The study was funded by the Federal Ministry of Health (BMG- LTDEMENZ-44-092).

P17.3. Intellectual Disability and Dementia: changing knowledge to change practice

Karen Watchman, Jo Alexjuk

The longer life expectancy now enjoyed by adults with an intellectual disability internationally brings with it an increased awareness of the incidence of dementia. Yet, associated knowledge of how people with an intellectual disability are affected by the condition has not been widely shared outwith intellectual disability services. Findings from a recent PhD study in Scotland about individual experiences of people with Down syndrome and dementia are presented to highlight the similarities and differences of dementia in people with, and without, an intellectual disability. Recommendations include a greater sharing of knowledge and information between intellectual disability services and dementia care services. 

Staff and carers in intellectual disability settings and aged care settings are increasingly providing support for people with an intellectual disability and dementia, and will continue to do so in the future. The lack of knowledge of dementia in people with an intellectual disability among staff can lead to further stigma and isolation among an already marginalised group. The aim of this session is to remove some of the stigma by considering the differences and similarities between dementia in people with, and without, an intellectual disability.  Differences include early symptoms, the age of onset, family situation, life experience, diagnosis, progression, where people live and associated health conditions. Similarities include the need for post-diagnostic support, interventions, pain detection, adapted communication, impact of friends and family, environmental adaptations and preparation for end of life care.

Research increasingly tells us of the perspective and perception of the person with dementia. We have yet to hear the voice of the person with an intellectual disability and dementia. Until this happens, research focusing on the experiences of the person with an intellectual disability and dementia can enable staff and carers to become more confident and knowledgeable at understanding and addressing the individual needs of people with an intellectual disability and dementia.

P17.4. The dementia experience intervention: a virtual reality experience of dementia

Hattink, B.J.J., Dröes, R.M., Rietsema, J., Meiland, F.J.M.

Objectives: Caring for people with dementia is considered a burdensome task. To provide informal carers and their social network, as well as professional carers (in education), with more knowledge and understanding about the experience of a person with dementia, the Dementia Experience (DE) is being developed. Core of DE is a mobile, interactive space where the visitor will experience dementia’s impact on daily life through virtual reality and ambient technology. By inviting informal and professional carers into the simulation, DE aims to promote the understanding of the experience of people with dementia and to increase empathy; thereby reducing carer burden and promoting more empathetic care.

Methods: Through literature study a large variety of experiences of people with dementia are identified. These experiences are discussed in 4 focus groups in the Amsterdam and Tilburg area, 2 with people with dementia and 2 with informal carers. A written questionnaire is administered to a wide range of professional carers about the occurrence and impact of these experiences in their daily practice. Using these results and considering the technical feasibility to simulate experiences, designers will create a scenario and develop a simulation in an interactive space. Parts of the simulation will be tested among a group of (in)formal caregivers. A group of 80 (in)formal caregivers will assess the final version of the simulator and its user-friendliness, usefulness and impact on coping and feelings of competence.

Results: The inventoried experiences of people with dementia are categorized into three different domains: the adaptive tasks outlined in the adaptation-coping model (Dröes, 1991), the Quality of Life (QoL) aspects indicated as relevant by people with dementia (Dröes et al., 2006) and the problem areas of the Dutch National Dementia Programme. Many people express experiences regarding the adaptive tasks, most notably on coping with and accepting of one’s own disability and preparing themselves for an uncertain future. Expressed experiences regarding QoL are most frequently related to maintaining self-esteem and social contact. The most expressed problem areas are feelings of loss and being frightened, angry and confused. The categorized experiences are presented in focus groups and to professional carers. Their opinions on frequency of occurrence and impact on daily life are inventoried.

Conclusion: The research findings on (frequency of) experiences and impact on daily life resulted in a list of experiences to be used in the simulation. During the conference impressions of the final prototype of the Dementia Experience are presented.

P17.5. Empowering the experienced caregivers to act as mentors to the caregivers with newly acquired caregiving role – A Preliminary Study 

Wong, Gemma Kam Chu

Caregiving as a paradigm is considered as an adaptation arrangement in the face of chronic health problems (Kahana& Young, 1990; Wong, 2006). The caregiving paradigm suggests that it is dependency that causes the need for care.   Study of caregivers and caregiving is often based on stress and coping model (Pearlin, 1989; Anahensel & associates, 1995; Wong, 2006).  Very often, family members take on the caring role without any previous training or psychological preparation. It is unlike physical illnesses such as pneuomonia when the care recipient could still have a chance of achieving a full recovery. Therefore, the supports given to the caregivers of person with dementia must be able to strengthen their caregiving skills and to enhance their knowledge on handling challenging behaivour at home.  The development of carer support service in Hong Kong is to provide a weekly meeting for family caregivers who need to take care of their family members with cognitive impairment.  Initially, the weekly meeting was organized by the professional staff. After one year, the professional staff has invited the family caregivers to co-organize the weekly meeting together. The use of empowerment has significantly improved the cohesion amongst the caregivers. Some experienced caregivers act as a mentor to those who have just entered into caregiving role.  One of the significance observations was that there was an improvement on the attendance of the caregivers. The presentation will further discuss other contributing factors for the success of weekly meeting in Hong Kong.  Both quantitative on social demographic characteristics, caregiving burden and daily hassle and qualitative data on their feedbacks toward the support group will be presented.

P17.6. Measuring constructive family/staff relationships to improve care for people with dementia

Michael Bauer, Deirdre Fetherstonhaugh, Virginia Lewis

Families play an important role in the wellbeing and health of older people with dementia who live in residential settings.

It is generally believed that a constructive relationships between family members/carers of people with dementia and staff working in residential aged care is likely to improve care delivery for the resident and possibly the experience of caring. However, in order to evaluate whether interventions to improve relationships between family members/carers and staff are effective or not, there must be a measure of the relationship pre and post the intervention.

This paper will describe the development of a clinically relevant tool that will enable residential aged care facilities to measure the attitudinal beliefs of its staff about staff-family relationships. The tool items were developed and tested in three phases. Phase 1 involved developing an initial item pool with good content validity based on: a systematic review of the research literature; interviews with residential aged care staff and families; and review of the initial item pool by an expert panel. This process reduced the initial pool of items from 76 to 46. Phase 2 involved initial testing of the psychometric properties of the tool with 200 residential aged care staff, leading to the reduction of the final tool length to 26 items. The final phase involved testing of the psychometric properties of the 26-item tool with 90 residential aged care staff.



Last Updated: Thursday 15 November 2012