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P11. Needs and experiences of people with dementia and their carers II

Detailed programme, abstracts and presentations

P11.1. Advance care planning for people with dementia: Ordinary everyday conversations


De Montfort University, Leicester, United Kingdom

Advance care planning for people with dementia has become a focus of dementia care policies in developed countries. However, for people with dementia, it may be too late to initiate these discussions in terms of decision-making capacity. Consequently, decisions about end-of-life care for people with dementia are typically made by a family member who acts as a surrogate decision maker on behalf of the person with dementia. An exploratory qualitative study of twenty-three family members who had been caregivers, or provided support for, a family member with dementia who had died within five years of the interview was undertaken. The overarching theme, ‘ordinary everyday conversations’, describes how informal conversations and discussions within the family relating to preferences at the end of life had been embedded in interactions within the families over years. Sub-themes revealed three important components enabling adherence to the prior wishes of the person with dementia through these conversations: knowing the person and belief in ‘doing the right thing’; the importance of Wills and Enduring Power of Attorney (EPA); and negotiating unexpected encounters. There is potential for families to be well prepared for the time when they may need to make decisions for the person with dementia based on ordinary everyday conversation that take place within families and throughout life. This study also suggests that more innovative approaches to making a Will may provide an important vehicle for expressing advanced care wishes.

P11.2. Ehealth interventions for family caregivers of people with young onset dementia

DE VUGT Marjolein1, PEETOOM Kirsten1, BRUINSMA Jeroen1, BAKKER Christian2, VERHEY Frans1

1Alzheimer Center Limburg/ Maastricht University, Maastricht, Netherlands, 2Radboudumc, Department of Primary and Community Care, Nijmegen/ Radboudumc Alzheimer Center/ Florence Care group, The Hague, Nijmegen, Netherlands

Ehealth interventions to support family caregivers of people with dementia are a relatively new but promising field. It offers opportunities to increase accessibility and tailoring to individual needs in a cost-effective way. Therefore, it can be a suitable strategy to address the specific needs of caregivers of people with young onset dementia. In this presentation, different, newly developed, Ehealth interventions for family caregivers of people with young onset dementia will be discussed. Ehealth interventions may be unguided self-help, or so-called blended care, including guidance of a professional. 

The program Partner in Balance is a blended care intervention that is developed specifically with and for family caregivers of people with dementia in its early stages. Results of a randomized controlled study shows significant effects of 'Partner in Balance' on self-efficacy, experienced control and quality of life in comparison to usual care. In a next step, the program has been tailored to the needs of caregivers in young onset dementia. Results of a feasibility study will be presented. 

A second project that will be addressed is RHAPSODY. It is an EU JPND project. The project has several aims. First, to evaluate the policy and information environment that provides the framework for the treatment and care of people with YOD and their carers in six European countries. Second, to assess the specific and individual needs of this particular group. Third, to use this information for designing an internet-based, multimedia, interactive learning course for family carers of people with YOD. The development and pilot study of this learning course at three sites in France, Germany and the UK are finished. The intervention will be adapted, translated and implemented in The Netherlands. 

P11.3. Coping resources and strategies among people with dementia: A systematic meta-synthesis of qualitative studies

ERIKSEN Siren1-4, HELVIK Anne Sofie1-2, IBSEN Tanja Louise1, TELENIUS Elisabeth Wiken1, GROV Ellen Karine3, BJØRKLØF Guro Hanevold1

1Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway, 2Norwegian University of Science and Technology, Department of Public Health and General Practice, Tønsberg, Norway, 3Oslo Metropolitan University, Department of Nursing and Health Promotion, Oslo, Norway, 4 Vid Specialized University, Oslo, Norway

Background:People with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. An increasing body of literature focus on how people with dementia find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advise and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge about persons with dementia’s experience of coping.

Methods: We conducted a systematic, computerized search of Medline, Embase, Cinahl Complete, Psych Info and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience.Studies comprised 1) a sample of persons with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 164 were identified as eligible and were read in full text. Of those 74 articles of good quality encompassing interviews with 955 people with dementia were included. The analysis was inspired by the qualitative content analyses.

Results: The material revealed two main resources of coping: (1) humour; and (2) practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) keep going and holding on to life as usual; (2) adapting and adjusting to the demands from the situation; (3) accepting the situation; and (4) avoiding the situation. A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia.

Conclusion: This meta-synthesis indicates that people with dementia cope in different ways and use several parallel strategies to meet the challenges they face.

P11.4. Empowering elderly people with dementia: A qualitative study


1Radboud University Medical Centre, Radboud Alzheimer Centre, Nijmegen, Netherlands, 2Open University, Heerlen, Netherlands, 3Radboud University Medical Centre, Radboud Institute for Health Sciences, Nijmegen, Netherlands

Background: Currently, empowerment is seen as a promising concept in dementia care. However, it remains unclear what empowerment means and includes for people with dementia. This study aims to explore the concept of empowerment for elderly people with dementia at home and in nursing homes.

Methods: We conducted thirteen focus groups: two with people with dementia, three with family caregivers, one with people with dementia and their family caregiver together, and seven with healthcare professionals. Furthermore, we conducted four individual interviews with people with dementia. Inductive qualitative content analysis was used to derive codes, categories and themes from the data.

Results: In total, 15 persons with dementia (83±10 years, 3 males and 12 females), 16 family caregivers (66±11 years, 2 males and 14 females) and 46 healthcare professionals (48±11 years, 45 females and one male) participated. For family caregivers, 7 cared for their parent and 9 for their partner. For healthcare professionals, 27 provided care in a nursing home and 19 at home.

Preliminary findings show that participants considered the following themes as important aspects of empowerment: "having a sense of choice and control", "retaining sense of worth", "having a sense of usefulness and being needed" and "being the person who you are". These themes seem to be equally important at home and nursing homes, while practical detailing differs, e.g. different types of choices are made, or different activities are undertaken to feel useful. People with dementia mainly mentioned needs and wishes regarding empowerment, while caregivers mentioned what the environment could do to support empowerment for people with dementia.

Conclusion:Preliminary findings indicate that it is important for people with dementia that their capabilities are addressed, they can make their own choices and are seen as a person with an own identity who has something to offer to others.

P11.5. The needs of people with dementia as experienced by health care providers

ROKSTAD Anne Marie Mork1, ØVERENG Allan2, STRANDLI Elin3, TELENIUS Elisabeth Wiken4, ERIKSEN Siren5, BJØRKLØF Guro Hanevold4, KIRKEVOLD Øyvind6

1Norwegian National Advisory Unit on Ageing and Health and Molde University College, Molde, Norway, 2Norwegian National Advisory Unit on Ageing and Health, Stavanger, Norway, 3Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway, 4Norwegian National Advisory Unit on Ageing and Health, Asker, Norway, 5Norwegian National Advisory Unit on Ageing and Health and VID Specialized University, Drammen, Norway, 6Norwegian National Advisory Unit on Ageing and Healht, Norwegian University of Science and Technology (NTNU) and Innlandet Hospital Trust, Hamar, Norway

Background: One of the aims in the Norwegian National Dementia Plan 2020 is to ensure user involvement and participation. To enhance user involvement and individual tailoring of the health care services, a knowledge base of the needs of people with dementia is demanded.

Aim: The aim of the current study was to explore the needs of people with dementia as experienced by health- and social care providers.

Method: A qualitative explorative design was used including a total of 49 participants from both primary and specialist health- and social care in eight focus group interviews. Experienced physicians, nurses, auxiliary nurses, occupational therapists, social educators and physiotherapists, all working close to people with dementia, constituted the sample. Qualitative text condensation of the transcribed interviews was used to analyze the findings.

Findings: Five main themes emerged from the analyses; 1) a variety of emotional reactions and needs when receiving the dementia diagnosis, 2) to be open about the dementia diagnosis or not – a challenging decision to make, 3) the need for integrity and self-determination during the course of dementia, 4) the variety of need for information – about what, to whom and how? and 5) the need for a variety of services and the importance of the health care providers’ approach to people with dementia.

Conclusion: Based on the experiences of clinical health- and social care providers from a wide range of professions, user involvement of people with dementia should be encouraged by asking the person: “What is important for you?” The staff should be open minded and listen actively to embrace the individual needs of the person with dementia and tailor the treatment and care in line with these needs. 

P11.6. People living with dementia and family members in online discussion of their needs from surveillance technology


1INDUCT and University College London, london, United Kingdom, 2INDUCT and Amsterdam UMC, VUmc, Amsterdam, Netherlands

Background and objectives: Surveillance technology products such as GPS trackers are promoted as products that keep people with dementia independent and safe. However, there is a lack of information about what people with dementia and family members need from such technology. The objective was to gain an understanding of what people living with dementia and family members need from surveillance technology.

Method: A qualitative study gathered comments from the Alzheimer Nederland online discussion forum on which people with dementia and family members posted views and recommendations about surveillance technologies. These comments were analysed thematically with comments by people with dementia being analysed separately from those of family members.

Results: The forum showed how family members sought each other’s opinion for advice, and how people living with dementia described their views. In total 115 comments reported needs. The majority of comments were from family members and some from people living with dementia themselves. There appear to be three popular products, whilst little discussion was about how using surveillance technology would result in more independence and safety for the person with dementia. Instead, family members mainly discussed the need to locate the person with dementia accurately for their peace of mind. In contrast, people living with dementia prioritised user-friendliness, that is, a simple to use technology that fits within their capacity and daily routines.  

Conclusions: The needs of people living with dementia differ from the needs of family members. This has implications for future development of surveillance technology and highlights the importance of involving people with dementia themselves in the design process. Existing ‘generic’ products should not simply be ‘re-purposed’ or ‘re-marketed’ for use by or with people with dementia.



Last Updated: Tuesday 10 December 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche