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PO2. Dementia policies and strategies

Detailed programme and abstracts

PO2. Dementia policies and strategies

PO2.1. Quality principles: post diagnostic support


Focus on Dementia is a partnership improvement programme between Healthcare Improvement Scotland, Scottish Government and Alzheimer Scotland and is supporting the dementia strategy and implementation of the post diagnostic support guarantee for people with dementia.

Scotland’s dementia strategy sates that: ‘We will transform the availability, consistency and quality of post-diagnostic support by delivering the new post-diagnostic HEAT target.’  The target has been in place since 2013 and states that all people newly diagnosed with dementia will have a minimum of a year’s worth of post-diagnostic support coordinated by a link worker, including the building of a person-centred support plan.

In accordance with the guarantee, there is currently no measure of quality and so there is a risk that targets could be met but quality compromised.  As such, Focus on Dementia have been working with a range of health and social care professionals, third sector, policy, improvement and educational colleagues and carers of people with dementia to develop quality principles to support post diagnostic support and personalised outcome planning. 

During the session we will share our quality principles for post diagnostic support and Essential 5 bundle for personalized outcome planning to support staff delivering post diagnostic support.  These principles underpin Alzheimer Scotland’s 5 pillar model for post diagnostic support. 

The quality principles set the out the minimum standard of quality that people living with dementia can expect when receiving post diagnostic support and should underpin the practice of professionals. Principles include a focus on people, personalisation, pathways and participation and set out the enablers for supporting these principles to work in practice.

This work will inform Scotland’s Dementia Strategy 2016.  

PO2.2. Living well with dementia: informal and formal strategies among people with dementia and carers in the context of a regional dementia strategy in Cumbria, England


Cumbria, the second-largest region by area in England, has developed its own dementia strategy mirroring the aim of the national strategy to improve support for people with dementia and carers. A programme of work to improve services and support followed the launch of the regional strategy in 2011 and a commissioned user engagement project in 2012 sought to gather service user experiences of care and support in the region. The qualitative component of this project involved 19 interviews and 21 focus groups with 69 people with dementia and 84 carers in 2012 and 2013. Semi-structured questions focused on service user experiences and perceptions of services in addition to broader questions about how people lived well in their communities. From the latter questions, data emerged about the strategies individuals and families developed for living well with dementia. People adopted a range of approaches for managing everyday life that involved an interplay of informal and formal strategies and supports. For instance, families would weave together different services such as home care and day care, along with practical and social support from friends and neighbours, to assist carers in having respite time and to support the person with dementia in accessing activities and places in their local community. As dementia progressed, strategies for managing within families became more fragile and difficult to maintain, and access to services and formal support became more important. Yet accessing appropriate services was often difficult for families to manage, with a variety of challenges around availability and integration of care at a point when people were often overwhelmed by loss and exhaustion. From these findings, we conclude that more proactive and targeted support is required within regional strategies to develop capacity and enable access to appropriate services before informal strategies within families become too fragile and untenable.

PO2.3. Norwegian bipartisan parliamentary group

EGGEN Siri Hov

Norwegian Health Association has together, and on initiative from some Members of Parliament, started a bipartisan parliamentarian group Stortinget (Parliament) in Norway. The working group is headed by 3 MP’s; one from Conservative Party (Høyre) one from Labour Party (Arbeiderpartiet) and one from Christian Democrats. All three are also members of standing committee for health.

The group holds two meetings every session open for all members of Parliament, local and regional politicians and people from different organizations and NGOs working with dementia, research and care. The working group is especially involved in sharing best practice, and wants to inspire local politician and planners on good care and innovation. They also want to focus on the importance on research both national and internationally.

This parliamentarian group is special because it is bipartisan. In Norwegian politics is it rare and hardly ever found politician working together to solve and make new politics outside the different political parties. Cooperation with NGOs is hardly ever found to have this ongoing structure, and working outside the running of single matters. The Norwegian Health Association is proud to facilitate the working group, and find it very interesting to cooperate on long-term basis with members of parliaments on improving care, innovation and research on dementia.

PO2.4. The Norwegian Health Association's dementia research program


The program has been implemented using funds from the annual Norwegian fundraising eventTV-aksjonenin 2013. The objectives of the dementia research program are to contribute to fewer people being affected by dementia, and to slow the disease down and prevent it from developing further in those who have the disease. Approximately 9 mill euros in program, so far handed out 8 large projects, and last call for new projects may 2016.

By participating in our programme we want projects to improve research collaboration at a national level and strengthen interdisciplinary scientific research into dementia in Norway. This type of collaborative effort will increase the chances of achieving a research breakthrough. Specialist arenas will be organized for the projects to ensure the mutual exchange of experience and knowledge. Participants will be encouraged to share supervisory responsibility in the projects across discipline groups and geographic location. User participation in research is a key factor in ensuring the quality, relevance and implementation of new knowledge. Applicants are requested to describe how their project will attend to the user perspective, if relevant. If it is not relevant, grounds must be given.

PO2.5. Dementia Strategy Schleswig-Holstein


Germany adopted in 2014 the “National Alliance for people with dementia” on behalf of the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth and the Federal Ministry of Health. Beside of this nationwide action, regional framework conditions must also be considered.

Schleswig-Holstein is the most northern state of Germany and faces especially problems in supporting people in rural areas. Regarding this lack of support and the increasing number of people with dementia in these areas a statewide dementia strategy was developed. The main objectives were to define supply gaps and needs for action to create an overall concept and coordinated action and a political commitment for the future care planning in Schleswig-Holstein.

Schleswig-Holstein is the first state, which developed a dementia strategy on behalf of the state government. The process – organization and writing – was done by the Alzheimer Association Schleswig-Holstein as an Advocacy Institution for people with dementia and their caregivers. From November 2014 until March 2016 recommendations were collected by members of 3 interdisciplinary working groups, which met 4 times each. On top of that 10 interviews with different experts were included in the recommendations to make sure different perspectives are included. Regarding the demand “Nothing about us without us” the needs of people with dementia and caregivers were also considered, by asking them within several focus groups organized by the University of Applied Science Kiel.

Each working group discussed special topics:

Working group 1: Social Responsibility

Working group 2: Support of people with dementia and their families

Working group 3: Medical support and Care

The dementia strategy will be presented and hopefully adopted by the state government in September 2016. Beside the process of the development the new results and achievements of the “Dementia Strategy Schleswig-Holstein” can be presented at the Alzheimer Europe Conference 2016.

PO2.6. Better language better care language support to national guidelines for dementia care

ORRIT Olga, NORDBERG Gunilla, HOFFMAN Wilhelmina

In order to be able to provide good dementia care it is important to have a well-functioning communication. Good language skills is one essential criteria for successful communication. This can be a challenge in organizations where many caregivers have different native languages. Not being able to fully express oneself and/or understand colleagues at work may therefore lead to difficulties in providing good and safe care.

Swedish Dementia Centre (SDC) have produced an exercise book to help everyone who wants to learn more about dementia care and who wants get a deeper understanding of national guidelines. The book covers not only specific care terminology and everyday language but also includes exercises that encourage to dialogue and discussion.  The aim with the book “Language support to Dementia ABC” is to support caregivers and future caregivers with native language other than Swedish in their effort to learn the new language.

“Dementia ABC” is a free of charges web-based education based on the national guidelines for dementia care, published by National Board of Health and Welfare. The education was created by SDC to promote implementation of these guidelines. Today, more than 86 000 people have completed the education.

By implementing “Language support to Dementia ABC” at language/caregiver courses for adults with other native languages, we hope to motivate and encourage people to learn more about dementia care. It is also a fact that a diploma showing completion of the education “Dementia ABC”, today often is required when applying for work within the elderly care sector. Using the book at workplaces can also create opportunities to spontaneous discussions about dementia care and language use.

SDC is a non-profit foundation and a national centre for excellence in dementia care. SDC actively promotes future development in care of persons with dementia – towards a more dementia friendly society.

PO2.7. Advance care planning and advance healthcare directives with a person with dementia

BEGLEY Emer, SHANAGHER Deirdre, LYNCH Marie, WEAFER John, BECK Esther, RICKARD-CLARKE Patricia, BEATTY Sharon, MOLLOY Willie, MCCARTHY Geraldine, MURPHY Sarah

Background: Dementia is a progressive life limiting illness. People with dementia value planning ahead. It allows them to express wishes and preferences and reduces anxiety. With the enactment of The Assisted Decision Making (Capacity) Act 2015 guidance in relation to advance care planning and advance healthcare directives with people with dementia is required by health and social care professionals.

Methods: An expert advisory group was established. A systematic literature review, searching online databases, CINAHL and PubMed was carried out. Grey literature was also accessed. The themes were presided on by the expert advisory group. Identified literature review themes directed the scope of the guidance.

Results: 288 articles were deemed appropriate. Post review with the expert advisory group the scope of the guidance document was extended to reach the person with dementia and family carers as well as healthcare staff across all settings.

The themes from the literature include:

1.             Advance Care Planning & Advance Healthcare Directives with People with Dementia

a.             Advance care planning is difficult to engage in due to fluctuating capacity (1,2).

2.             Family members:   

a.             Uncertain about roles in advance care planning and having conversations (3).

3.             Professional Uncertainty

a.             Time constraints, lack of knowledge and understanding of dementia, advance care planning and legal responsibilities are factors (4-9).

Guidance is offered on each on each of the above areas.

Conclusion: A guidance document has been prepared for health and social care staff to provide palliative care to people with dementia. The document will be published and made available via the Irish Hospice Foundation website.

PO2.8. Who will see me? – Children who have a parent with dementia

SKJELLESTAD Trine Nordby, HOTVEDT Kirsti, BJØRKLØF Guro Hanevold, HAUGEN Per Kristian

Background: As a part of the Norwegian Dementia plan of 2015 and 2020, the Norwegian Directorate of Health has given The Norwegian National Advisory Unit on Ageing and Health (Ageing and Health) the assignment to develop services for children below 18 years of age who have a parent with dementia.

In Norway, one out of four people in the early stages of the disease, before the diagnosis is set, have children below 18 years of age. Ageing and Health cooperates with the Norwegian National Association for Public Health in this project.

Objective: The aim is to identify what kind of follow-up children below 18 years of age who have a parent with dementia receive from the Specialist health care system and to develop services based on these findings.

Method: To find out through mapping how many children below 18 years of age who have a parent with dementia the Specialist Health services have met and what kind of help these children has received.

Results: Information from 20 units in the Specialist Health services was collected. The follow up of the children were insufficient. Children receive little information and they are not included in decisions regarding themselves. The mapping also showed that 50 children below 18 years of age had a parent with dementia.

Based on these findings we have developed two webpages, two information movies and one information brochure. At the same time also based on these findings Ageing and Health will arrange a summer camp for children below 18 years of age in the summer of 2016.

Conclusion: This project shows that there is a need to develop services for children who have a parent with dementia. It also shows that health care professionals should have a greater focus on the children.

PO2.9. Why we need better built environment design when considering neurological impairments: designing for the mind


In 2012 the Prime Minister of the United Kingdom (David Cameron) launched a national challenge to fight dementia. The key aspirations of this challenge being to improve awareness & understanding of dementia and to support those affected by dementia to gain equal access to support & care.

In 2015 two important documents were published in support of the above; the Alzheimer’s Society UK sponsored the development of a Publicly Available Specification (PAS1365) ‘Code of practice for the recognition of dementia-friendly communities in England’ and; HBN 08-02 ‘Dementia-friendly Health & Social Care Environments’. Both documents acknowledge the importance of the design of the built environment to the quality of people’s everyday lives.

There is rightly much emphasis placed upon how we deliver care but very little in relation to how we design better built environments when considering neurological impairments such as dementia.

For over 25 years our multidisciplinary team of clinical specialists, architects and designers have been promoting the importance of design for people with dementia. We have developed a unique insight into what can be done to support people with dementia, based on research and evidence of what makes a difference. We have also developed a series of good practice design principles which when implemented into the design of our care or home environments, can support people with dementia to remain independent for longer.

In a similar manner to the design evolution witnessed as a result of the Disability Discrimination Act (1995) this presentation will consider whether the introduction of a building standard for designing for neurological impairments will promote better built environment design and whether legislating for such will encourage innovation & buy-in across the construction sector.

PO2.10. Camps support youths living with a parent affected by dementia


Living with a parent who has Alzheimer’s disease or other dementia can have a big impact on children and youths. Often their own health is at risk and they might experience stress symptoms like stomach ache, depression and anxiety. It can also affect their studies and make them isolate themselves from friends.

Society’s awareness and support for this group of young people is often inadequate or non-existing, in the healthcare system as well as in schools.

Therefore a unique project was started in 2011 in the municipality of Avesta. Four health care workers had recognized the increasing problem and started a camp for young people in the age of 18-30, who were living with a parent affected by dementia. Two years later, another camp was set up for even younger children, 7-17 years old, together with their healthy parent. Both camps quickly attracted participants from all over Sweden.

At the camps the children and youths get professional help and useful information by lecturers. They can also take part in recreational activities in beautiful surroundings. Alzheimerfonden’s financial support makes it free of charge.

On these occasions many of the participants make friends with others their age who are in the same situation. After camp they usually keep in touch and support each other through social media or in real life. The participants’ response has been overwhelming. Some have used words like “magical” and “life-saving”.

These activities are now expanding and in the summer of 2016 camps were held also in the south and the north of Sweden. Seven Swedish municipalities now collaborate to pass on the successful concept from Avesta.

PO2.11. Development and validation of a European cross-cultural neuropsychological test battery

NIELSEN Rune, WALDEMAR Gunhild on behalf of the European Cross-Cultural Neuropsychological Test Battery (CNTB) consortium

Background: With the changing demographics of Europe’s elderly populations, the number of elderly with dementia is expected to increase considerably. Due to the specific history and conditions of some immigrant populations, this increase may be more pronounced in these populations. Moreover, validated neuropsychological tests for cross-cultural cognitive assessment of the older persons belonging to ethnic and linguistic minorities are generally lacking in Europe. The aim of this study was to develop and validate a cross-cultural neuropsychological test battery for assessment of some of the main ethnic minority, as well as majority, groups in Europe. Methods: A neuropsychological test battery was assembled based on a thorough review of existing literature that was supplemented with two additional tests that were developed specifically for the study. In an international multicenter study, people with dementia and healthy controls with Turkish, Moroccan, Pakistani, former Yugoslavian and Polish immigrant backgrounds as well as majority populations were recruited from January 2012 onwards. All subjects were exposed to the neuropsychological test battery consisting of 12 neuropsychological tests covering multiple cognitive domains: global cognitive function, memory, language, executive functions and visuospatial functions. All subjects were assessed in their primary language. Results: Preliminary results indicate that the majority of the tests have good discriminatory properties for dementia. Also, the cross-cultural validity of the neuropsychological test battery was found to be excellent, with most measures being unaffected by cultural/linguistic background and several tests being unaffected, or only slightly affected, by level of education and illiteracy. Conclusions: The proposed neuropsychological test battery has great potential for valid cross-cultural cognitive assessments of older persons belonging to ethnic and linguistic minorities in Europe.

PO2.13. Facing the challenges together – evaluation of weekend courses for persons with early onset dementia and their spouses

FOSSBERG Marit, HAUGEN Per Kristian, BAARLID Kari-Ann, HOTVEDT Kirsti

Background: It is estimated to be 4000-5000 persons with early onset dementia in Norway. The families need information and support to cope with the social and psychological challenges associated with this disease.

A pilot project where persons with early onset dementia and their spouses participated at a week-end course was tried out in 2007-2010. As a part of Dementia Plan 2015 the Norwegian Directorate of Health gave the Norwegian National Advisory Unit on Ageing and Health and Norwegian Health Association the responsibility to further develop, organize and evaluate nationwide courses in 2012-2015.   

Objective: The aim of this study was to evaluate the impact the weekend courses have had on persons with early onset dementia and their spouses

Method: Separate focus groups for persons with dementia and their spouses were conducted on the final course day and the participants were asked to fill in a questionnaire. A follow-up survey was conducted among spouses three months after participation.

Results: A total of 242 persons with dementia and 244 spouses participated at 27 courses with lectures, group discussions and social activities. Totally 82 percent of the participants evaluated the content in the courses as very useful. Analyzes of the qualitative data resulted in following categories for the persons with dementia: To meet others in the same situation (1), Mutual identification (2) and confidence and Openness (3), for the spouses: Knowledge and coping (1), Fellowship and support (2) and Confidence and understanding (3). In the follow-up study 82 percent of the spouses expressed that it was easier to talk about the challenges as a couple after participating at the course.

Conclusion: The week-end courses have contributed to greater knowledge, understanding and fellowship among many persons with early onset dementia and their spouses. The courses are continuing in 2016 as a part of the Dementia Plan 2020.

PO2.14. Inequalities in access to treatment and care for patients with dementia and immigrant background

STEVNSBORG Lea, JENSEN-DAHM Christina, NIELSEN Thomas Rune, GASSE Christiane, WALDEMAR Gunhild

Background: Previous studies demonstrated lower quality diagnostic assessment of dementia in immigrant populations, but knowledge about the quality of treatment and care for dementia is still lacking.

Objective: To conduct a nationwide registry-based study to determine whether inequality exists regarding access to anti-dementia treatment and care between immigrant and Danish-born patients with dementia.

Methods: A cross-sectional register-based study was conducted in the entire elderly (60≥ years) population with dementia in Denmark in 2012 (N=34,877). The use of anti-dementia drugs and residency in a nursing home were compared among Danish-born and Western and non-Western immigrants with dementia. Logistic regression analysis was done with adjustment for age, sex, comorbidity, marital status, and time since dementia diagnosis.
 Results: Immigrant background was associated with a significantly lower likelihood of receiving anti-dementia drug therapy (odds ratio (OR) [95% confidence interval (CI)]): non-Western = 0.70 [0.56-0.87]; Western = 0.74 [0.65-0.87]). No significant differences were found in type or amount of anti-dementia medication dispensed between the population groups (proxy measure for adherence). Non-Western immigrants were significantly less likely to live in a nursing home (0.52 [0.41-0.65]).

Conclusion: This nationwide registry-based study indicated a worrisome difference in access to anti-dementia treatment and care for dementia patients with an immigrant background, but similar levels of adherence compared with the Danish-born population. Further research is necessary to pinpoint barriers to access to suitable healthcare among elderly immigrants with dementia but also to identify and develop culturally sensitive methods for their treatment and care.

PO2.15. Supporting the implementation of the Italian National Dementia Plan: the dementia observatory and the survey of services for people with dementia

DI PUCCHIO Alessandra, MARZOLINI Fabrizio, LACORTE Eleonora, DI FIANDRA Teresa, VANACORE Nicola

More than 1 million people in Italy live with dementia, together with more than 3 million people directly or indirectly involved in their assistance. The estimated health-care and social-care costs reach 10-12 billion euros per year.

Italy was the first country to introduce, in 2000, memory clinics (Unità Valutative Alzheimer – UVA), within the CRONOS Project.

The Italian Ministry of Health (MoH), in 2014, in cooperation with the Regions, the National Institute of Health (NIH), and the three main associations of patients and caregivers, defined the Italian National Dementia Plan (NDP). Its main purpose was to provide directives to promote and improve interventions in dementia. Actions were not limited to the specialist and therapeutic field, but were focused on supporting patients and families throughout the care pathway. The NPD renamed the existing UVAs as “Centers for Cognitive Disorders and Dementias” (CDCD), maintaining their central role in the network of health-care and social-care services and recognizing the need to reorganize services for dementia in integrated care pathways.

In order to support the implementation of the NDP, the NIH was assigned the management of a national project, within the 2013 program of research actions of the MoH (CCM), aimed at providing an overview of services for dementia. More than 2500 structures (CDCDs, daycare centers, residential care facilities), totally or partially covered by the public healthcare service, were surveyed and included in an online map allowing to search services by type and by Region/Province, and providing all useful related information. The online map is available through the “Dementia Observatory” website (, entirely dedicated to dementias. Data from the survey are also available for Regions to plan services for people with dementia.

The NIH is currently receiving a grant from the UE and the MoH to participate in the European JA 2015-2018 on dementia as co-leader for a WP on crisis and care-coordination, and as participating partner in a WP on diagnosis.

In conclusion, Italy is committed to creating/strengthening a network of services for dementia based on an integrated approach.

PO2.16. Weekend courses for young adults who have a parent with dementia 

ØVERENG Allan, FOSSBERG Marit, HAUGEN Per Kristian

Background: As part of the Norwegian Dementia plan the Norwegian National Advisory Unit on Ageing and Health has developed weekend courses for young adults between 18 and 30 years with a parent with dementia. On symptom onset 75% of young persons with dementia in Norway have children below age of 30. Studies show that young adults need support aimed directly at them and they express the need to meet others in the same situation.

The project is a collaboration with the Norwegian Health Association and units in Health Care services.    

Objective: The objective is through weekend courses to give the participants support aimed at coping with challenges of dementia and to meet others with similar experiences.   

Method: The method was to develop a model for weekend courses. The participants were asked to fill in a questionnaire related to how they had experienced their participation.

Results: Ten courses have been held with a total of 77 participants. The courses have consisted of lectures, group discussions and social activities. The average age of the participants was 24 years. The majority of the participants evaluated the courses asVery usefuland the group discussions as very important. They expressed two issues as important; information about dementia, and how to cope with feelings, care and practical tasks.

Conclusions: The evaluations of the courses are very positive. It indicates that this is a good measure to help young adult children who have a parent with dementia to cope with their situation.

With increasing numbers of persons with dementia and increasing focus on psychological wellbeing in young adults the project gives important experiences in developing future initiatives for this group.

PO2.17. How are people with memory diseases excluded from workplace equality in Finland?


According to the Finnish Non-Discrimination Act everyone, regardless of disability or health, should be treated equally at work. However, people who are diagnosed with memory disease at working age rarely continue working due to delayed diagnosis, employers’ uncertainty of the disease’s effects on employee’s ability to work or lack of rehabilitation plans.

In my master’s thesis study at the University of Helsinki I analyzed qualitatively eight guide books made by Finnish ministries and labor market organizations. The common aim of the data is to define what the concepts equality and diversity signify at workplace. Although it’s estimated that in Finland up to 10 000 people are diagnosed with memory disease at working age, in this data people with memory diseases or even the term “cognitive performance” isn’t mentioned. This result indicates that people with memory diseases aren’t taken into account by the main actors who influence on opinions of workplace equality.

How are people with memory diseases excluded from workplace equality? By using Iris Marion Young’s theory of external and internal exclusion processes, it was found that in this case the exclusion process wasn’t external since the right to work for people with memory disease wasn’t actively impeded. Nevertheless, the lack of recognition points at internal exclusion which means that people with memory diseases weren’t actively supported to continue working.

This outcome may be intended or it may be done unconsciously. The lack of recognition may originate from stigma towards memory diseases. Also the idea of citizenship based on certain activities that a person should be able to perform to become a member of the society, may exclude people with memory diseases. By pointing out the current discriminatory practices we may help people with memory diseases to reach equality at work.   

PO2.18. Supporting people with dementia to die at home in Ireland


Background: The Irish Hospice Foundation has funded a night nursing service for people with conditions other than cancer since 2006. The number of people with dementia referred to the service has risen each year since then. The Irish Hospice Foundation carried out an audit of all of the referrals received where people had a diagnosis of dementia between June and December 2015.

Aim: The aim was to explore components of care which support a person with dementia who accessed the night nursing service to die at home.

Method: Supplementary information from specialist palliative care teams (SPCT) was gathered for 52 dementia referrals to the night nursing service between May and December 2015.


  • The availability of family/ friends to provide care to a person with dementia appears to be a key determinant to them staying at home
  • Having a supportive GP was important for a large number of the sample.
  • The decision to stay at home was made by the person with dementia or their families in over 50% of the sample
  • The majority of the sample were referred to specialist palliative care teams in their last week(s) of life
  • Access to formal supports and care packages varied throughout the country.

Future Plans: A report will be made available online with the findings of this audit. This includes recommendations for people with dementia, for family members, for staff and for service planners. Information will also be shared with all of the specialist palliative care teams.



Last Updated: Friday 09 September 2016


  • 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