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P8. Carers of people with dementia

Detailed programme and abstracts

P8.1. The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years

JOLING Karlijn, O’DWYER Siobhan, HERTOGH Cees, VAN HOUT Hein

Objective: Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self-harm. This study explores thoughts of suicide, self-harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts.

Methods: Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands. Caregivers did not have a clinical depression or anxiety disorder at baseline. Suicide-related thoughts were measured with an item from the Mini International Neuropsychiatric Interview, a diagnostic instrument for DSM-IV mental disorders. Fisher exact, analysis of variance or Kruskal–Wallis tests compared the characteristics of caregivers who had contemplated suicide with two comparison groups.

Results: Within 24 months, 76 caregivers reported symptoms of a potential depression and were further assessed for suicidal thoughts. Nine carers (11.8%, 4.7% of the total sample) reported suicidal thoughts with three of those at multiple points. Caregivers with suicidal thoughts had more severe depressive and anxious symptoms, had a lower sense of competence and mastery, felt less happy and experienced more health problems, less family support and more feelings of loneliness than caregivers who had not.

Conclusion: Suicidal thoughts are present in dementia caregivers and can persist across the care trajectory. Various psychological and social characteristics significantly distinguish caregivers with suicidal thoughts from those without. More research is needed to enable the identification of high-risk caregivers and provide an evidence base for the development of preventive strategies and interventions.

P8.2. Developing an online intervention to support young onset dementia caregivers

MILLENAAR Joany, BAKKER Christian, VAN VLIET Deliane, KOOPMANS Raymond, KURZ Alexander, VERHEY Frans, DE VUGT Marjolein

The onset of dementia at a younger age generates numerous psycho-social challenges related to the early phase of life. Individuals generally have more professional, financial and social responsibilities and the changes in cognition and behaviour can considerably impact family relationships. Caregiver support is increasingly common in dementia care, however, facilities are often specifically designed for the elderly and might have difficulties in addressing the needs of younger individuals. To address their unique needs and experiences, the online educational and skill-building programme ‘RHAPSODY’ was developed based on the experiences of young onset dementia (YOD) caregivers in 6 European countries. To investigate caregiver’s experiences and needs, a mixed method approach was used including a literature review, individual interviews and focus group interviews. The results revealed important themes for the development of the online intervention program. This online program helps providing YOD caregivers with tailored information and practical support to enable them to cope with dementia and its consequences.

P8.3. Investigating the impact of positive aspects of caregiving on caregiver sense of competence: a national survey of family carers of people living with dementia


Background: As the population continues to age and life expectancy increases, dementia diagnoses are on the rise (Alzheimer Society, 2014). The contribution of family carers therefore has major economic and clinical consequences. Caregiver sense of competence is a concept often included in psychosocial research to evaluate the impact of interventions for caregivers of people with dementia (Jones, Edwards & Hounsome, 2012). Previous conceptual models of sense of competence (Vernooij-Dassen et al., 1996) indicated the negative impact of factors such as neuroticism and severity of dementia on sense of competence in caregivers. However, there has been little investigation as to how the positive aspects of caring may impact sense of competence.

Methods: A mixed-methods national survey of family caregivers was conducted with 583 family carers of people living with dementia in the community. The constructs of sense of competence, resilience, self-efficacy, health-related quality of life, gains in caregiving and social engagement were measured. Thematic analysis was employed to generate themes from the qualitative data, collected in open-text boxes within the survey.

Results: Family caregivers reported generally high levels of sense of competence overall. Sense of competence was associated with sense of coherence and self-efficacy for managing dementia. Positive psychology variables significantly predicted sense of competence in a regression analysis. Six themes were identified from the qualitative data, including ‘impact of caregiving’, ‘external support’ and ‘coping resources’.

Conclusion: Results indicate that positive aspects of caring are related to, and significantly impact a caregivers feelings of being competent to deal with the task of caregiving. These findings have theoretical and clinical implications for research and practice with family caregivers of people living with dementia.

P8.4. Dementia friends match app

STAWICKI Eva, STENSGAARD Vita, The Danish Alzheimer Association

The Danish Alzheimer Association has developed an application with the purpose of matching Dementia Friends with people with dementia. The aim of the project is to develop a volunteer based care relief concept for relatives that cater for the need for flexibility in terms of time, place and activities. With the Dementia Friends Match project, the Danish Alzheimer Association aims to create a program that at one hand enhances the quality of life of the person with dementia and on the other hand relieves the closest relatives.

Background of the project: In 2015 the Danish Alzheimer Association launched a project to make Denmark more dementia-friendly by activating Dementia Friends. The purpose of the project is to increase the Danish understanding of dementia diseases, and to transform the understanding into action.

As of Today, more than 42.000 Danes have already signed up to be a Dementia Friends and several wants to make a further effort to help people with dementia and their relatives. At the same time, the Association experiences a need from relatives for care relief in everyday life living with a person with dementia.

The web-based application will visualize local and concrete needs for care relief and structuring and match the families in need with the volunteer Dementia Friends. The web application also includes learning programs to educate and qualify the volunteer Dementia Friends for the job as caretaker. The Danish Alzheimer Association cooperates with 8 municipalities, whom, among other things, advocate for both Dementia Friends and relatives to use the application. The 8 municipalities also assist in evaluating the project. After the project expires, new matches between Dementia Friends and relatives will continue to be initiated via the application. The method is based on other successful matchmaking apps such as Be My Eyes.

P8.5. Relationship quality perception of spouses and adult child carers of people with dementia

MARQUES Maria, WOODS Bob, GONÇALVES-PEREIRA Manuel, Actifcare Workgroup

Introduction: For many people with dementia, quality of life is intrinsically related to the relationship with a family carer, often of long-standing. Typically, the carer is a spouse or adult child, but we do not know how the quality of relationship differs in these distinctly different types of relationship. The Actifcare (ACcess to Timely Formal Care) EU-JPND project provides an opportunity to address this issue, with people with dementia and their families, in eight European countries.

Methods: Cross-sectional data was analyzed for 425 community-dwelling people with dementia and their family carers (67% spouse/partners; 33% adult-child), The Positive Affect Index was used as a measure of relationship quality. This data was augmented with qualitative data from focus groups (n=15) and interviews with carers (n=56) from the Portuguese Actifcare site, analyzed specifically focusing on relationship quality.

Results: No significant differences in the perception of relationship quality were evident between the two groups overall, although there were differences at an item-level (e.g. adult children scored lower on shared activities and similarity of views). For adult child carers relationship quality was explained mostly by carer characteristics (e.g. age; stress) rather than person with dementia characteristics. For spouses, both carer and person with dementia variables (e.g. neuropsychiatric symptoms of the person with dementia) predicted relationship quality. The qualitative data showed differences linked to pre-caregiving quality of relationship, social support and access to/ use of formal care services. Spouses were most reluctant to access/use formal services, such as home care or day centre, especially if they were women.

Discussion/Conclusions: Whilst spouses/partners and adult children may report similar levels of relationship quality, the factors contributing to this perception appear different. Understanding relationship quality will assist in identifying how best to maintain quality of care and support carers who wish to maintain care at home.

P8.6. Supporting social interaction of sign language users with dementia


Dementia is increasing worldwide among users of sign languages and affecting their social interaction every day. Caregivers face challenges in communication with sign language users with dementia (Deaf with dementia, DWD) when the illness progresses. The aim of this research is to analyse the challenges of social interaction with DWD and to find out ways for caregivers and memory consults to support DWD.

Data were gathered by thematic interviews of caregivers (n=11) and memory consults (n=2) of DWD. The interviews were audio taped (oral interviews) or video recorded (interviews in Finnish Sign Language, FiSL). Both recordings were transcribed verbatim and analysed with inductive content analysis.

Preliminary results indicate that caregivers and memory consults use FiSL and speech or clear lip movements with DWD. The interviewees had experienced challenges in interacting with DWD. Often the caregiver or memory consult initiate and carry the interaction. Challenges in interaction vary according to the linguistic skills of DWD who may forget FiSL and use more speech. When using FiSL the signs may be replaced or differ from the sign meant to be produced. It is also common that handshapes alter due to physical problems.

Furthermore, caregivers and memory consults have several ways to support the social interaction of DWD. They sign in a calm manner, maintain active eye contact, use FiSL even in severe stages of dementia, and repeat the message in a concrete way. Interpreting nonverbal communication of DWD also supports the interaction.

In sum, DWD have a capacity and willingness to communicate even in severe stages of dementia. The main challenge in interaction is the mutual difficulties in comprehension. It is of great importance that DWD can live in a signing environment when living with dementia. Caregivers benefit from gaining knowledge on dementia and using the life history of DWD.



Last Updated: Monday 23 October 2017


  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche