Basket | Login


P15: Family carers

Detailed programme, abstracts and presentations

P15: Family carers

P15.1. Mobile dementia counselling: an instrument to support informal carers in rural areas in Germany


Studies show that comprehensive and accessible counselling for people with dementia and their informal carers can improve the informal care setting in many ways. For example, a need-oriented and early use of counselling is fundamental for using professional care services. However, many informal carers do not use counselling due to various reasons such as an information deficit and a lack of (regional) accessibility of counselling.

The Rhine-Erft district, a rural area in Germany, improved its network of dementia care services by establishing a mobile gerontopsychiatric counselling with special focus on dementia. A specially equipped “counselling bus” offers free counselling at several public places in towns and villages of the district at least once a month. The counselling-team consists of two persons: one is a qualified full-time staff member from one of the co-operation partners (welfare associations or local social services) and the other is a qualified honorary consultant. The main objectives of the counselling service are to give informal carers an individual and neutral overview about local care services and to raise awareness for people with dementia. Using a multi-method approach, the concept “mobile dementia counselling” was evaluated with the aim to determine how mobile dementia counselling has to be designed and implemented to meet the needs of informal carers.

The results show first, that mobile dementia counselling is a low-threshold and successful way to reach informal carers and to inform them about different aspects of dementia care. Second, it contributes to the improvement of their caring situation and helps to reduce the burden of care. Third, it also improves the cooperation and communication of local stakeholders regarding dementia care. Based on these and other data from the evaluation, recommendations for an effective and successful implementation of a mobile dementia counselling service will be derived.

P15.2. Carers’ of people with dementia perceptions of resilience and the factors that strengthen resilience

MURPHY Kathy, CASEY Dympna

Background: Approximately 26,104 people with dementia are living in the community in Ireland being cared for by family and friends. Carers report a lack of support, information and skills. Many therefore experience high carer burden, are at risk of mental and physical illness, and become socially isolated. These problems can result in being placed in residential care prematurely which has significant economic and health costs. However little is known about carers perceptions of resilience and the factors that strengthen their resilience.

Aim: This study explores carer’s perceptions of resilience and the factors that facilitated or hindered their resilience when caring for people with dementia.

Methods: A descriptive qualitative study was conducted based on the work of Thorne (2004).  Semi structured interviews with a purposive sample of twenty eight (n=28) persons with mild dementia were undertaken. In particular the interviews focused on careers resilience in caring for persons with dementia, how their capacity for resilience could be enhanced to assist and support them to continue caring for the person with dementia in their own home for as long as possible. All interviews were tape recorded and transcribed verbatim. Transcripts were analyzed for themes and Windle (2012) resilience framework was used to guide the analysis.  The criteria identified by Lincoln and Guba (1985) were used to ensure and maintain rigor.

Findings: Findings indicate that internal and external factors influenced participant’s resilience.  These included self-esteem, coping style, knowledge of dementia, supports and engagement in pleasant activities, maintaining social networks, connection to, and learning from, other carers, humour and time for self. This study concludes that resilience is important to the sustainability of caring for people with dementia and resilience can be strengthened providing appropriate supports are in place.

P15.4. Family caregiving in young onset dementia in Flanders (Belgium): an exploration of the needs of caregivers


The department of geriatric psychiatry of the university hospital of Leuven and LUCAS KU Leuven collaboratively conducted an explorative study on the needs of family caregivers of persons with young onset dementia in Flanders (Belgium).

We recruited 23 family caregivers of persons with early onset dementia: 21 spouses, 1 parent and 1 sibling. A short structured questionnaire and HICLASS-grid were combined with a semi-structured interview with the participants. Data were analysed using thematic content analysis.

Experiences of receiving the diagnosis of dementia confirm earlier research that stipulates the difficult and often long process of diagnosing dementia. We found that the general practitioner may have an important role in facilitating or hampering this process. Family caregivers stress the feelings of loneliness in the search for support for the person with dementia. However, they are positive about the current care initiatives (e.g. day care). The needs of family caregivers are diverse: from information related to the disease, over practical help, emotional support for themselves and their children, to individualized advice on meaningful day-to-day activities. A lot of caregivers ask for case management as a continuous form of personalized support.

Based on these results, we provide recommendations to improve support for families confronted with early-onset dementia.

P15.5. Factors associated with satisfaction in informal caregivers of dementia patients


Introduction: As life expectancy of people increases, the prevalence of different pathologies and age-related syndromes also rises. In this sense, the prevalence of dementia along with the demands and concerns of the caregivers of dementia patients have incremented considerably. The research on this field has mainly dealt with the negative aspects of caregiving, specifically with caregiver burden and depression. However, less attention has been paid to the positive aspects of caregiving.

Objective: The aim of this study is to determine some of the factors that could predict the phenomenon of caregiving satisfaction in informal caregivers of people with dementia.

Method: 101 family caregivers of patients diagnosed as having dementia participated in this cross-sectional study. A stress process model was used to study caregiver’s satisfaction in relation to the caregiver’s background and context (caregiver age, caregiver gender, level of education, marital status, type of relationship with the care recipient, employment status, and duration of caregiving), stress-related factors (care recipient dementia severity, frequency of care, subjective burden, likelihood of changing work shift, leave work to take care of the relative, and caregiving competence), and mediators (support from the general practitioner, dementia supervisor, relatives and friends, home services, respite care services, self-help groups perceived social support, and satisfaction with social support).

Results: Multiple regression analyses revealed that having a consanguinity relationship with the care recipient, suffering from lower levels of subjective burden, and caring individuals with severe cognitive impairment are the most significant predictors of higher caregiving satisfaction.

Conclusions: Interventions should be addressed to caregivers without having a consanguinity relationship and with high levels of subjective burden, and to those managing care recipients with mild or moderate stages of dementia. These findings suggest that the interventions should be focused on the enhancement of the caregiving satisfaction by increasing the understanding of the illness.



Last Updated: Tuesday 29 September 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene