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P5. Assitive technologies

Detailed programme and abstracts

P5. Assistive technologies (Tuesday, 1 Nov., 14.00 - 15.30)

P5.1. Keeping connected: using modern technology to enhance involvement of the Scottish Dementia Working Group

Scottish Dementia Working Group

The Scottish Dementia Working Group (SDWG) is a national campaigning group, run by people with dementia. We are the independent voice of people with dementia within Alzheimer Scotland. The Working Group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia.

Background: The SDWG encourages membership across Scotland however, some members are unable to be as involved as they might like to be because they are not able to attend meetings. Recognising the potential of technological connectivity, group members were keen to use modern forms of communication for both internal connectivity and external engagement.

Methods: The group successfully applied for funding to purchase iPads for a one year pilot project. Training involved a combination of peer support and one-to-one tuition, provided by a SDWG volunteer, but some members, particularly those without family support at home, had difficulty working the iPads.

The group purchased the services of an IT training company to deliver a 6 week, certificated, training course. After a successful evaluation further training has been secured, with those who completed the first course given the option to complete an enhanced level course.

Conclusions: Many of the original pilot group can access email; use twitter and other social media platforms; skype or face-time into meetings; and find information on the internet.  This has allowed the group to make links with potential new members living in remote locations and facilitated committee members to be involved in meetings when unable to travel.

While support from family members proved useful for some members, the formal training was essential for many. Completing the certificated course gave members confidence, boosted their self-esteem and was a source of great pride for those who took part.

Members are committed to rolling out the use of technology to enhance involvement of the group and extend the opportunities to meaningfully engage people with dementia in campaigning, research, policy and influencing change.

P5.2. A digital life storybook application for people with dementia and their caregivers.

O’ PHILBIN Laura, WOODS Bob, BARHAM Tom, SUDDABY Alli

Background: Research on Life Story Work for people with dementia and their caregivers is becoming increasingly focused on Information and Communication Technology (ICT) based interventions. ICT plays a key role in facilitating people with dementia and their caregivers to actively create and share their own life stories without external assistance.

Aim: To investigate if the creation and use of a digital life storybook positively affects the well-being of, and the relationship between, people with dementia and their caregivers.

Method: This study is a three-month pre-/post intervention. We aim to recruit 250 persons with dementia and their caregivers. This initiative is unique in that the intervention and research will take place entirely on a free ICT application (app). The app will be hosted on the Dementia Citizen Science Platform initiated by the UK Government. It will be recommended that participants use the app at least twice a week. The app facilitates personalised digital Life Story Work by enabling participants to create and use their own life storybook incorporating photo, video and audio. Each time the app is used, participants will complete some brief questions about the session and how they are feeling. Participants will complete the Quality of Life in Alzheimer’s Disease Scale, Positive Affect Index, and Short Warwick Edinburgh Mental Well Being Scale before, during, and immediately after the intervention. Additional data on the frequency, duration, and type of use will also be collected by the app. 

Outcomes: Preliminary results in relation to well-being and relationships will be presented in addition to findings from the momentary assessment feedback. The implications of using ICT as a tool to facilitate people with dementia to create and tell their own life story without relying on additional services will be discussed in relation to the results.

P5.3. Friends with benefits: Living a good (digital) life with dementia

STELLA Eloisa, LEORIN Cristian

Background:Over the pastfew years a new generation of bloggers, social media participants, and digital activists living with dementia has paved the way to a quiet game-changing revolution. Not only their online presence is challenging the stereotype of the powerless and helpless person with dementia, but their collective voice is also facilitating the emergence of new online communities of individuals who are more empowered and knowledgeable about their rights and opportunities to live a good life beyond their illness. From Australia to Germany, from Nigeria to the United States, thousands of digital citizens with dementia from across the globe everyday make new friends, engage in informal learning and mentorship activities, share stories, news, advice, and solidarity, and promote mutual collaboration to compensate for the lack of appropriate resources and support within their local communities.

Aim: The objective of this study is to give a sense of how formal and informal online communities of individuals with dementia use a variety of internet services to share peer support and knowledge, while adding quality to their social lives.

Methods: The research is based on a blend of digital ethnographic tools, including observation, live experience-alongs, interviews, analysis of user-generated content and narratives.

Results: This first-of-a-kind study provides an anthropological perspective onto the experiences that people with dementia have online. More specifically, it illustrates how internet is helping them come together in ways that are changing both how they both experience and express their illness while contributing positively to their everyday lives.

Conclusion: An anthropological perspective on the online social interactions of individuals with dementia may not only enrich and deepen our current understanding of the illness as a sociocultural experience, but it has also much to offer as a basis for post-diagnostic interventions.

P5.4. Living at home – an online show-flat (not only) for people living with dementia

JACOBSEN Wienke

In old age and especially living with dementia, the importance of the home and narrow living environment increases as mobility and cognitive functions decrease. The majority of the people with dementia lives in their own homes, mostly cared for by relatives. Living at home means independence, self-determination, comfort and familiarity, but beside of that, there is a need of adequate protection and security. Often these needs and the living situation do not match: stairs and doors are insurmountable obstacles, bathrooms are not wheelchair accessible, the stove might be left on or mirrors could scare people with dementia.

Therefore, comprehensive and individual information on possible aids or small reconstruction works for apartment adaptation is offered by the Competence Center Dementia, a project of the Alzheimer Association Schleswig-Holstein. A model apartment (show-flat) for people (not only) with dementia, which was the first one in Germany, is located right next to the office, where professionals and families can try everything out to see if they like it. This is an excellent way to gather information and obtain practical tips for home adaptation and financing.

Since long driving distances are often an additional burden for caregivers, an online tour through every room (e.g. kitchen, bathroom, bedroom) is now provided. In this way further information about all the aids or possible reconstruction can be given to many more people. It is planned to translate the website into English, to open this innovative platform to an international public. A short visual tour through the apartment can be shown at the conference with practical examples. Beside aids especially for people with dementia, more low priced alternatives from e.g. a hardware store can be presented, as can be seen at: www.demenz-musterwohnung.de

P.5.5. New online platform ‘dementie.nl’ for support of carers. Co-created with carers

GROOT ZWAAFTINK Rob, STOKMAN Jacqueline, POST Herman

Taking care of a relative or friend diagnosed with dementia can be very demanding. Moreover, there is an increasing need for informal care coming from the environment. Alzheimer Nederland and its partners launched the new online platform dementie.nl on April 19th. A platform for informal carers of people with dementia where they can find and share tips, answers and experiences. It is a source of information for practical care and welfare related questions. Our aim is to give support in the different phases of dementia, from (before) diagnoses until aftercare.

Organizing and carrying on with caregiving

The platform dementie.nl will continue to develop based on the wishes and needs of informal carers. With (so far) over 200 pages of information, tips and experiences from carers, every informal carer can focus on what is important for them at that particular moment during the disease. When someone registers to the platform (‘Mijn Alzheimer Nederland’), they can keep track of pages visited, make comments and crosslink with our forum.

Furthermore, people visiting the platform can get in touch with several Experts and ask questions to a healthcare expert, ‘casemanager’ dementia, general practitioner, and experts from Alzheimer Nederland. Soon, there will also be added experts on the field of pension and notarial issues.

Moreover, dementie.nl offers a spotlight for initiatives that are focused on the care of someone with dementia, this is called ‘Prachtig!’ (Wonderful!).

Another functionality that will be available soon (May 2016) is the ‘Mantelzorgtest’, a test for informal carers to establish whether or not they can still manage the situation. After doing this easily accessible test, the participant receives advice and relevant information and support to alleviate the pressure related to informal caregiving. Also an e-learning module is created (ready in summer 2016) for coping with changes in behavior.

The platform has been made possible thanks to the collaboration between Alzheimer Nederland and their founding partners.

User statistics:

Unique visitors: 75.000 (soft launch was on 10th of November 2015), big launch April 19th

Average pages viewed: 4,2

Average time on site: 2:35 min

P5.6. Changing everyday activities and technology use in mild cognitive impairment

NYGÅRD Louise, HEDMAN Annicka, MALINOWSKY Camilla, ALMKVIST Ove, KOTTORP Anders

Introduction: Knowledge of the conditions under which older adults facing cognitive decline engage in everyday activities is of major importance for health-care practitioners, for example occupational therapists, in designing post-diagnostic support. This study aimed to investigate perceived activity involvement over time and its longitudinal relationship to perceived ability to use everyday technology in older adults diagnosed with mild cognitive impairment.

Method: Thirty-seven older adults with mild cognitive impairment at inclusion were assessed over four years. Overall and item-specific activity involvement were analyzed using mixed-linear-effect modeling and differential item functioning. Furthermore, overall activity involvement and ability in everyday technology use were correlated.

Results: Overall activity involvement decreased significantly over time (F=8.745,p<.001). When adjusting for declining ability in the sample, actual differential item functioning indicated descending involvement in seven of fifteen activities, otherwise stable. All leisure activities descended. The positive correlations between activity involvement and ability in everyday technology use became stronger over time (at baseline:r(d.f. 35)=.30,p=0.07; at year four:r(d.f. 23)=.54,p=0.005).

Conclusion: Variations across activities and time-points suggest that occupational therapists should repeatedly monitor the increasingly associated aspects of activity involvement and ability to use everyday technology in persons with cognitive decline. This is important to facilitate timely interventions supporting valued activities, including also the area of leisure.

 

 
 

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
 
 

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