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P12. Informal carers

Detailed programme and abstracts

P12. Informal carers (Tuesday 1 Nov., 16.00 - 17.30)

P12.1. Remaining involved in decisions! How do family carers facilitate this for people with dementia?


A diagnosis of dementia can present a threat to an individual’s sense of self and personhood. As the disease progresses the person may find it increasingly difficult to interact with the environment, carry out conventional roles and complete everyday tasks. Remaining involved in decision-making can uphold one’s autonomy and provide some sense of control over one’s life. Family carers of people with dementia living in the community are in a unique position to facilitate and support the person with dementia’s remained involvement in decision-making.

This presentation will report on research which explored how family carers support people with dementia to make, or be involved in making, decisions. Face to face semi-structured interviews were conducted with seventeen participants comprising seven married couples (carer and person with dementia dyad) and three single carers (two spouses and one son).

Three interrelated themes arose from the analysis of the interviews: the importance of decision-making to the humanity of people with dementia; ensuring safety and minimising risk; and knowing the person and working together.

Family carers developed strategies to support decision-making for the person with dementia by mitigating rather than eliminating risk and in many instances were assisted by others in the community such as neighbours.

P12.2. Looking from another angle: Reframing helps reduce burden and empower caregivers of persons living at home with dementia

PIHET Sandrine, KIPFER Stephanie

Informal caregivers of persons with dementia (IC-PWD) play a key role in helping their loved ones continue living at home. As IC-PWD face day after day the behaviour changes and symptoms associated with dementia, many experience a heavy burden, putting them at high risk for exhaustion and health challenges, often resulting in early institutionalization of the PWD. Psycho-educative interventions, particularly those held in groups and combining information, learning strategies, and active participation, are known to be most effective in improving quality of life in IC-PWD. Such interventions typically include diverse strategies, and little is known about the implementation of these strategies by the IC-PWD. Our aim was to evaluate the efficacy of a validated psycho-educative program comprising all these features and to document strategies’ implementation in daily life. The 15-session program focused on three coping strategies (reframing, problem-solving and support-seeking). We conducted a quasi-experimental study in 18 IC-PWD who completed the program (dropout rate 21%). Efficacy was assessed pre- and post-intervention by validated questionnaires measuring burden, psychological distress, self-efficacy, and problem behaviours of the person with dementia and their emotional impact on IC-PWD. Strategies’ implementation questions were answered biweekly on a tablet throughout the intervention, and focused on IC-PWD use of and success at reframing, problem-solving and support-seeking. Burden (t=2.13, p=.025, d=0.41) and psychological distress (t=1.94, p=.035, d=0.54) decreased significantly, and self-efficacy increased (t=-2.33, p=.016, d=0.47). Over the course of the intervention, IC-PWD improved in their ability to identify their unhelpful thoughts (β=0.10, p=.045), tried more often to reframe them (β=0.24, p=.005), and became more successful at doing so (β=0.24, p=.018). In contrast, problem-solving and support-seeking overall remained stable. In conclusion, looking from another angle at the challenges associated with caring for a PWD seemed to be the most implemented component of an efficient psycho-educative program for informal caregivers.

P12.3. Catalysts for change: the carers’ voice


Introduction: It is widely acknowledged that people with dementia and their carers should be involved as equal partners when it comes to development of dementia policy and strategy. But what does this mean in practice?

Alzheimer Scotland’s National Dementia Carers Action Network (NDCAN) is a national campaigning and awareness raising network whose members all have experience of caring for someone with dementia.

This paper describes how carers worked with Alzheimer Scotland to develop information and training resources on rarer forms of dementia, and the critical factors that made this engagement work.

It’s not always Alzheimer’s…

A strong example of this co-productive way of working is the development of information and training resources on rarer types of dementia by Alzheimer Scotland. The catalyst for this work came when NDCAN raised the lack of support and information available about rarer types of dementias.

NDCAN began work with Alzheimer Scotland’s Workforce Development team to examine how they could make a positive difference in this area. They quickly identified there was little evidence about what works in terms of support for people with rarer dementias and their carers.

Adopting an action research approach, they brought together a group of ‘experts by experience’ – carers, people with dementia and members of staff to gather lived experiences of rarer dementias.

The outcome of this work was a series of information sheets and a short film which has contributed to staff learning, both within Alzheimer Scotland and with external partners.

Summary: This paper demonstrates a concrete example of carers working hand-in-hand with professionals to better meet the needs of people with rarer forms of dementia and their carers. By listening to and involving carers at all stages of the process, they have developed tools which will make a real difference to many people’s lives.

P12.4. The impact of informal dementia caregiving on employment – the Bavarian Dementia Survey (BayDem)

NICKEL Franziska, SCHALLER Sandra, MARINOVA-SCHMIDT Velislava, BARTH Janina, HESS Manuela, DE LA ROSA Vanessa, PAPE Franziska, GRAESSEL Elmar, KOLOMINSKY-RABAS Peter L.

Background: As dementia progresses, the ability to independently perform activities of daily living (ADL) diminishes. Community-dwelling persons with dementia (PwD) increasingly depend on support, predominately provided by informal caregivers. The working caregivers may be subject to a double burden. Thus, this analysis examines the informal care time of working dementia caregivers and their absenteeism due to caregiving responsibilities.

Methods:  BayDem is a multi-center, longitudinal study at three different sites in Bavaria, Germany. Participants are PwD and their informal caregivers. Data is collected by means of standardized, face-to-face interviews in close cooperation with local dementia institutions. Baseline data of the internationally validated instrument “Resource Utilization in Dementia” (RUD) was assessed.

Results:  In total, 35% of informal caregivers (n=44) are employed. Of those, 77% are children and 7% are spouses or life partners of the PwD. Their average daily time spent to provide assistance in ADL, such as eating and bathing, amounts to 1.1 hours. Furthermore, caregivers assist on average 2.5 hours a day to perform instrumental activities of daily living (IADL), for instance, shopping or medication intake. The average weekly employment hours’ amount to approximately 30 hours. A reduction of the usual weekly working hours was indicated by two caregivers, respectively amounting to one and six hours per week. Within the timeframe of one month, 14% of the informal dementia caregivers indicated at least a one-day absence from work because of their caregiving duties. Nine caregivers (11%; M=54 years; 89% female) resigned to provide informal care.

Conclusion:  More than one third of informal caregivers are employed. This is especially true for children of PwD. Dementia strategies should consider support for caregivers to facilitate the compatibility of work and caregiving responsibilities.

The research was initiated by the Bavarian State Parliament and is funded by the Bavarian State Ministry for Health and Care (StMGP).

P12.5. Approaches to truth telling in the care of persons with dementia: A Delphi study

MESKELL Pauline, LYNCH Una, MURPHY Kathy, COONEY Adeline, HOUGHTON Catherine, SMYTH Siobhan, GANNON Mary, HUNTER Andrew, CONWAY Aislinn, CASEY Dympna

Introduction and Background: There are no published guidelines available for health professionals on strategies to adopt when working with persons with dementia who ask questions or make statements that are false. As a consequence professional carers are left in a vulnerable position when faced with this dilemma during care provision.

Aim: To generate guidelines for carers on the best approach to take for people with dementia when they ask questions or make statements that are false.

Methods: This paper reports on a three round electronic Delphi survey with a purposefully selected panel of international dementia care experts (n=65). The Delphi was part of a larger mixed methods convergent parallel design study. The qualitative aspect of the larger study was conducted across the island of Ireland and involved focus group interviews with people with dementia and carers. Ethical approval was obtained.

Findings: Results indicated that panellist were strongly in favour of the person with dementia being central to care planning, with a person centered approach essential. Panellists considered it important to consider the stage and type of dementia when planning strategies of care, and felt that strategies used should optimise function. It was considered important to include family members in planning care approaches. Panellists agreed that practitioners must know and understand the person with dementia to be able to respond appropriately. There was general agreement that the use of therapeutic lying was sometimes acceptable if done to protect the ‘personhood’ and autonomy of the person with dementia. Its use as a strategy depended on the stage of dementia of the person and other factors including knowledge of the person and previous experience of reactions. Carers must use approaches that optimise the functioning of the person with dementia whilst preserving their dignity and autonomy.

P12.6. Caregivers’ sense of competence and experienced positive affect in daily life: an experience sampling study


Objectives: Positive emotions and feelings of competence seem to play an important role in well-being of caregivers of people with dementia. Both are likely to fluctuate constantly during the caretaking process. Unlike standard retrospective methods, momentary assessments provide insight into these moment-to-moment fluctuations. Therefore, in the current study retrospective and momentary assessments were used to examine the relationship between caregivers’ sense of competence and positive affect (PA).
 Methods: Thirty-one caregivers collected momentary data on PA and sense of competence for six consecutive days using the Experience Sampling Methodology and reported retrospectively on their sense of competence.
 Results: Caregivers reported more sense of competence when measured momentary at the end of each day than when measured retrospectively. Both measures of sense of competence were positively associated with levels of PA. However, only daily sense of competence was related to variability in PA in that a higher daily sense of competence predicted a more stable pattern of PA. Overall, momentary assessments appeared to be stronger predictors of both intensity of and variability in PA.
 Conclusions: Momentary assessments are a valuable addition to standard retrospective measures and provide a more comprehensive view of caregiver functioning. Negative feelings and consequences of the caregiving process seem to prevail in retrospective reports. This study provides support to redirect caregiver support interventions more towards enhancement of positive rather than negative experiences and to focus more on caregivers’ momentary emotional experiences.
 Future perspectives: Our next goal is to develop an ESM-based intervention in which caregivers collect momentary data and receive personalized feedback on daily patterns of PA and the context in which PA is experienced. The aim of such an intervention would be to enhance caregivers’ self-awareness and redirect their behavior to situations that elicit positive emotions.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche