Working Meeting Report: A Dementia Journey

Digital MeetingOctober 16, 2020

Theme: A Dementia JourneyOctober 16, 2020

Isabelle Cehlin - Chief of Operations, Bonnier HealthcareRickard Forsman - CEO, Geras SolutionsProf. Miia Kivipelto - Professor of Clinical Geriatrics, Karolinska InstitutetLeif Lohm - Medical Director, BiogenMary Michael - VP, Patient Advocacy and Stakeholder Management, OtsukaGunilla Nordberg - VP, Swedish Dementia CentreDan Wieberg - International Public Relations Director, Home Instead

Awareness campaigns on all levels of local, regional and global, should be used to spreadknowledge. Different stakeholders need to join forces to make a difference.

Early diagnosis is key. We need to shift from a reactive approach to a more proactive approachand educate communities about the disease.

Give dementia a face by showing stories from people that live with the disease. People need tounderstand that you can live healthy for quite a long time and that there sometimes is a longperiod between diagnosis and institutional care.

Attitudes and understanding have to be changed. Globally, more than 60% of health providersdo not consider dementia as a brain disease but as a normal part of aging.

Government programs and public awareness programs have to take advantage of themomentum of positive news in 2021. Many times people do not want to know that they havethe disease if there is no treatment or course of action.

There are many ways to reach people today. Social media (influencers or organizations) can beused to tailor channels for communicating. They should highlight where resources can be found.How they can access the resources and use them.

GROUP 1: First Signs

Participants:

Q1: How can we help society to identify patients with early symptoms of cognitive decline?

Q2: In what way can we spread information across the world about the diseases and the earlysymptoms? Could more information and awareness improve understanding of early symptoms?

Working Meeting 2020

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The pandemic has driven many patients to virtual channels, which creates a huge opportunity toreach out to family members about dementia. Agitation and behavioural questions are on topic now.Families are not aware of all resources available. We should focus also on family members andeducate them.

Main focus has been on memory. During the pandemic there has been an increase in phychiatricsymptoms such as anxiety and many people visiting hospitals and memory clinics are in acuteconditions. We need to educate people about the other aspects of the disease to help caregiversbetter identify symptoms and how to alleviate them.

Regular medical screenings and checkups are important as doctors may be able to present aids forcertain symptoms. New technologies are being developed and they need to be launched into publicawareness.

Q3: What are best practices and good examples on how to reduce early symptoms?

he focus of awareness has mainly been on memory loss, butsometimes behavioural symptoms will accompany that or even occurbefore the deep cognitive impairment. Many caregivers struggle to dealwith these symptoms and lack medical training. Therefore, there are twopeople we need to think about. Not only the individual living with acognitive impairment through dementia, but also the caregiver. Wereally have to support them because they are the ones supporting thatindividual at home.

Mary Michael, VP, Patient Advocacy and Stakeholder Management, Otsuka

e need to start educating more people about dementia andhelp them develop a better understanding of the disease. ADI's report onAttitudes shows that 62% of healthcare providers worldwide think thatdementia is part of normal aging. Clearly, by starting with improvingattitudes and helping people understand that dementia is a braindisease, we can increase understanding and show why it is important todiagnose early.

Prof. Miia Kivipelto, Professor of Clinical Geriatrics, Karolinska Institutet

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Prof. Peter Allebeck - Professor of Social Medicine at Karolinska Institutet and Medical Officer at theCenter for Epidemiology and Community Medicine, Stockholm County CouncilOskar Bosson - Vice President Investor Relations & Communications, BioArcticMats Ekelund - Nordic Value & Access Director, BiogenLiselotte Jansson - Secretary General, AlzheimerfondenTomas Odergren - Chief Medical Officer, BioArcticLinda Käll - Manager of Customer Success, Bonnier Healthcare

Blood tests have immense potential and will be a cost-effective way to diagnose dementia in the nearfuture.

Integrate dementia in primary care, it should be part of standard health examinations.

Digital solutions for cognitive tests, for example via mobile devices.

Primary care must support the families and let them know what they can do to help the affectedperson.

Blood pressure control on a regular basis and other potential diseases such as diabetes, highcholesterol etc.

Educate about the need of support and about what type of support is needed in the different stagesof the disease.

GROUP 2: Assessment & Diagnosis Participants:

Q1: How can early diagnosis be supported and enabled in low- and middle-income countries?

Q2: After diagnosis is set, what help/support do/can/should we offer the patient and their family?

ome Instead has had a successful global campaign that trainscompanies to be more Alzheimer-friendly. You keep an awareness in thecommunity about how important Alzheimers is and how many people aredealing with that challenge. This makes people more sensitive in theworkplace. When we train people in grocery stores, in restaurants and inpharmacies for example, it makes the employers more sensitive to theiremployees, especially that care falls disproportionally on women. Theyleave the workforce and turn down promotions because of caregivingresponsibilities. It is therefore important to be out there in society andmake people more sensitive to dementia. The more we can create asensitivity and awareness around it, the better off we are going to be.

Dan Wieberg, International Public Relations Director, Home Instead

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Develop inclusive care programs and digital tools.

Support relatives with information about the disease and the different stages and how they canaffect the person with dementia. Care plans need to be individualised and reflect the person's needs.

Universal health coverage is essential to ensure quality of life.

Educate the health care personnel on how to explain to the patient what is going to happen with thediagnosis and how the disease will develop over time.

Support family members with information to broaden their understanding of the disease anddistribute checklists for each stage of the progression.

Follow up with the patient and family members throughout the progression of the disease.

Q3: How do we better develop diagnostic tools, care programs and education material for people withdisabilities?

Q4: How can we better incorporate caregiver qualitative responses as a part of diagnosis?

group that we always tend to forget in the discussions aboutdementia are the people with early-onset dementia. We have severalambassadors representing our organisation, who are trying to reduce thestigma associated with dementia that are in their early 50s. It is a shockto receive the diagnosis at such an early age and many of them struggle toget adequate and relevant help. As Sweden does not have a nationaldementia plan in place, the kind of support you get depends on theinitiatives within your municipality and the work of NGOs. Politiciansand policymakers need to do more.

Liselotte Jansson, Secretary General, Alzheimerfonden

e need to encourage people to seek help when they noticebehavioural changes in their spouses, parents or other family members.Sometimes, the person suffering from the changes does not want to go and this has a lot to do with attitudes and stigma associated withcognitive decline. Preparation and attitudes in the general public as wellas in primary care is vital in order to diagnose the disease in time.

Prof. Peter AllebeckProfessor of Social Medicine at Karolinska InstitutetMedical Officer at the Center for Epidemiology and CommunityMedicine, Stockholm County Council

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Richard Andersson - Senior Analyst, Swedish Research CouncilDr Mani Chandran - Geriatric Specialist, Hamad Medical CorporationProf. Maria Eriksdotter - Professor in Geriatrics and Medical Officer, Karolinska Institutet /Karolinska University HospitalDr Hanadi al Hamad - Medical Director, Hamad Medical CorporationIrene Meier - Clinical Neuropsychologist and Neuroscientist, Brainfit4lifeLenny Shallcross - Executive Director, World Dementia Council

Educate companies and their employees about cognitive decline and how it can manifest itself. Helpthem understand what they can do to improve the situation and accomodate the employee in thebest way possible.

According to the Swedish dementia registry, only 5% under the age of 65 diagnosed with dementiaare working. New ways of using technology could help these individuals in the workplace by creatinga cognition-friendly environment.

Implement necessary work adaptation and rehabilitation measures to facilitate the nature of thework.

There is a gap between the information patients and family members receive and the information andsupport they need. A broad spectrum of organisations and institutions would need to work togetherto standardise guidelines throughout the different stages.

In Qatar, a national helpline has been launched in 2020 to provide patients and family members withsupport, information and education materials. WHO's guidelines are also being translated andcustomised for Arabic culture. In the later stages, behavioural symptoms have become an issue asmany caregivers do not know have to help the patients. An app highlighting risk reduction, earlydiagnosis and the later stages could help caregivers navigate.

In the UK, you can access a dementia support worker for 12 months after a diagnosis to receivecounseling and early stage support.

Better data is needed in the sense that governments should know how people actually live across allstages of the disease. That motivates more funding in research and innovation.

GROUP 3: First Period of Illness Participants:

Q1: What can employers do to accommodate employees that have been diagnosed withdementia/early on-set dementia? (Dementia-friendly workplaces? Carers caring for a person withdementia etc.)

Q2: How can policymakers ensure that family members and caregivers are provided with information,support, access to assistance to prepare them for the dementia journey ahead?

Q3: How can we create incentives for governments to fast-track tech innovations and increaseresearch funding?

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There is an absence of data on how people live in early stages of disease and funding of that type ofsocietal research is terrible compared to social and economic research. Many policymakers might seeit as unattractive thing to fund.

Dementia ratings could be an incentive for governments to fund more research in their country.

n an ideal world everyone would get a diagnosis in the very earlystages of the disease and receive help and support and some might evencontinue to work. The truth is that most people, for many differentreasons, get diagnosed very late or not at all. In the UK, it can take up to 8months between the family first realising symptoms to presenting themto the primary care phycician.

Lenny ShallcrossExecutive Director, World Dementia Council

n many Arabic countries, there has previously been a widespreadnotion that cognitive decline is just a normal part of aging and manypatients would get screened much later. Through educating differentparts of society and launching awareness campaigns in the last 4 years,we can now see a shift and more people want to get an early diagnosis.

Dr. Hanadi Khamis Al HamadMedical Director, Hamad Medical Corporation

weden has a lot of data covering the later stages of the diseaseand we have better mechanisms to support patients. We also have freeweb based educational materials that are available for caregivers,primary care physicians, police, social workers etc. However, we arecurrently not able to provide full support in the earlier stages and need todevelop a better support system for patients.

Prof. Maria Eriksdotter Professor in Geriatrics and Medical Officer, Karolinska Institutet /Karolinska University Hospital

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Claes Dinkelspiel - Chairman of the Board, SCIDr Wilhelmina Hoffman - CEO, Stiftelsen Silviahemmet/Swedish Dementia CenterChris Lynch - Deputy CEO and Director of Policy, Communications & Publications, Alzheimer’sDisease InternationalBritt Monti - Creative Leader, IKEAMonica Panizo-Knuth - Director of International Business Development, Home InsteadLaurent Saunier - Head of Department, Health&Life Sciences, Vinnova

Government financial constrain is a challenge. The change in commissioning is needed.

Person with the diagnosis can still contribute to the society, instead of being seen as a burden.

Match-making between generations may be of help.

Strengthen the power of education and highlight the value and credibility of care as a career.

Provide proper status and title to profile care as a career at a higher level. Change the measurementof care outcomes, i.e. not to measure in functional output, but rather psycho-social benefits,enjoyment of the life-style, satisfaction of people who is receiving the care.

Create innovative business models that involve more stakeholders, such as family members. Wecannot expect extra outcome from the same healthcare system.

Change the perception of technology as a facilitator of independency rather than a controller.

More testing and demonstrations of technology is needed in combination with managing consent ofpeople with dementia.

A center that gathers all information of new technologies or ideas would be interesting to look at.

GROUP 4: Home Care/Day Care Participants:

Q1: How can home care move from task-orientation to relationship-based efforts to address isolation,anxiety, loneliness amongst people with a dementia diagnosis?

Q2: How should policymakers incentivize home care so that more people take the chance to create acareer in this sector?

Q3: How do we make sure that digital healthcare alternatives are adapted for dementia patients whenphysical contact is not possible?

Q4: Day care has the advantage of avoiding isolation, prolonging the time people with dementia can stay at home and is affordable. How can we better develop and promote day care as care option?

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ometimes the care is commissioned by the local government.When the local government budgets are on the constrain, it means thatthis is generally on a stopwatch. The caregivers can be in and out in 20minutes. It becomes a functional type of support and it loses thepersonalisation and the human touch. I think moving towards a morerelationship-based focus would have to come through a change incommissioning, that we put more value on the time that they spend withthe person that they are supporting.

Chris LynchDeputy CEO of Alzheimer's Disease International

hen a diagnosis is made, the patient turns into a burden andimmediately becomes a cost. Whereas in reality, it is a continuousspectrum. Along that spectrum, a person can still contribute to the socialcontracts. A lot of work can be done in transforming the image via mediawhere the person is forced into an objectified passive role. Empoweringpeople to still be able to contribute to the social contract is a great way initself to improve the mental health.

Laurent SaunierHead of Department, Health&Life Sciences, Vinnova

am very much involved in the internet and we have an internet bankwith 1.1 million clients. The domestic changes over the 12 months hasbeen an expanding rate of roughly 180%, meaning that before, peopleover the age of 50 saw the internet as threat. Today among people up to79 years old, there are only 15 % that see internet as an obstacle. Forpeople over 80 years old, 60% see it as danger. Knowing that the nextgeneration accepts the internet 100%, I think it is time for us to prepareourselves for the next generation.

Claes DinkelspielChairman of the Board, SCI

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A new movement in Scotland called "Self Directive Support" encourages people to decide how theircare budget should be allocated. People can choose to go to a day care center if they want to.

Day care centers need to be elevated to a level that is much more personalized.

Samuel Jun - Director Department of External Cooperation & Fund, Korea University Guro HospitalProf. Ulrika Winblad - Professor of Health Services Research at the Department of Public Health andCaring Sciences, Uppsala UniversityInger Jonsson - Senior Advisor, FortePernilla Rönntoft - General Manager, AttendoUlrich Zerhusen – CEO and Owner, St. Anna-StiftHans Lingegård - Marketing Director, Segment Marketing, Arjo

Make use of quality registries and improve the way data is being utilized, so that it truly helps toprevent bad nutritional statuses among residents and enable the creation of daily meal plans.

Encourage more studies on nutritional topics in elderly care and consider cultural aspects.

Digital therapeutic technologies may be of help.

Some research indicates that computerised reminders are effective, such as a recording system ofpatients clinical data that helps to ensure the knowledge and guidelines are being followed.

It is important to ensure adequate knowledge of normal ageing and dementia symptoms and howthey can be handled properly.

Short-term contract personnel are not given enough skills and competencies.

Architecture effects of dementia ward are important.

All aspects should be combined, including education, proper architecture design as well astechnological help.

GROUP 5: Institutional Care Participants:

Q1: In what ways can we improve nutritional care in nursing homes?

Q2: How can training and education improve care for residents with dementia and what currentresearch supports it?

Q3: Approximately 40% - 60% of people with dementia in care home facilities experience behaviouraland psychological symptoms (BPSD). How can care homes and their staff better help ease thesesymptoms?

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utrition has been looked at from a very technical way, measuredby what calorie, what vitamins, but it is also important that peopleactually enjoy the meal at the nursing home and that culture andheritage is taken into consideration.

t is important that the staff has the knowledge of normal ageing anddementia. When the knowledge is adequate, you can observe thesymptoms and see what problems has caused it, and you can dosomething about the problem.

ifferent puzzles need to be added together. If the care happens ina setting that is very bad for the residents with dementia, then it is unfairto the staff. Due to the fact that the architecture is so confusing, itcreates frustration of the knowledge that care staff can produce.Knowledge of the staff does not work if it is not the correct layout.Technological help is also another important piece of the puzzle.

Ulrich ZerhusenCEO and Owner, St. Anna-Stift

Pernilla Rönntoft General Manager, Attendo

Prof. Ulrika WinbladProfessor of Health Services Research at the Department of PublicHealth and Caring Sciences, Uppsala University

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Sarah Lenz Lock - SVP for Policy, Research and International, AARPDebbie Rozario - Clinical Director, ArjoLil Ryott - President, Dr Åke Olsson FoundationProf. Ingmar Skoog - Professor in Psychiatry at Gothenburg University and Director at AgeCapPetra Tegman - CEO, Swedish Care International, International Relations, Stiftelsen Silviahemmet

Establish studies to identify how palliative care is practiced in different countries.

Adopt best practices from different countries and develop guidance wherever palliative care isrelevant.

One misconception of palliative care is that the term equals to no medical treatment on the personregardless of whether he/she has other health conditions than dementia.

The other misconception of palliative care is that the term equals to end of life care and death,whereas in reality, palliative care is to maintain high quality of life with good symptom control over along period of time.

Education and knowledge can be better understand what palliative care really is.

Research in risk calculation can be done on measuring the consequence of isolation and the risk ofactually getting COVID-19.

The mental health of family members who are being left behind should be in the discussion.

GROUP 6: Palliative Care Participants:

Q1: In what ways can we ensure quality in end of life care in countries where palliative care is notapplicable?

Q2: How do we raise awareness about advanced dementia and when to move from medical diseasetreatment to palliative care?

Q3: How will palliative care medicine change with COVID-19 (i.e. no hugs, no physical touch, isolation,and so on.)

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ne of the misconception of palliative care that I always get is thequestion of "are you working with death?" No, I am not. I am workingwith life. My job and the healthcare system’s job is to make sure that youhave the best kind of quality of life until you die. So we will do everythingwe can to make you live good together with good symptom control for aslong as possible, of course.

Petra TegmanCEO, Swedish Care International

am a little bit afraid of using the word palliative care in relation todementia. You have care for dementia. It is a chronic disorder. And wealso have many other chronic disorders where people have treatment.Well, I think we do have treatment. I think good care is treatment. Wehave some systematic treatment. So there are things we can do. But tostart talking about palliative care is very dangerous.

Prof. Ingmar SkoogProfessor in Psychiatry at Gothenburg UniversityDirector at AgeCap

f someone is diagnosed with heart failure, which I think it is one of theworst terminologies, it gets people to think "my god, this is the end. I amgoing to die." But it does not mean that. It means that you have adisfunction. I know that dementia may be different. But people get veryhung up on the word. Patients believe that the term affects how they aretreated. And a lot of professionals and people who are really caring forthem frequently use the term, which has a massive psychological impactof patients and families.

Debbie Rozario Clinical Director, Arjo

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Suggested Cases

National Helpline set up to providesupport and advice for patients living withAlzheimer’s and their families.

Qatar - Dementia Helpline Sweden - Senior Alert Registry

Research focusing on senior alert registrydata usage in nursing homes—how the datais being used today? How do we utilize thedata in a more effecient way to improvepersonalized care and offer individualizednutrition plans?

UK - Dementia Support Worker

After receiving a diagnosis, patients areentitled to 12 months of counselling fromDementia Support Workers. They offerinformation and practical guidance to helppatients and family members understandthe condition, cope with day-to-daychallenges and prepare for the future.

Forum organized by Alzheimer Fund, RedCross and Senior Citizen associations. Thefirst Tuesday of every month, a seminarabout a topic within the dementia field isheld.

Sweden - Brain Café (Café Hjärna)

A digital therapeutic app that providesnutritional data on the food that elderlywant to eat. The app provides guidance onwhat to eat, how to exercise etc. Thecompany is trying to get insurancecoverage and has done an initial trial oncancer patients. The company has theambition to include a broader range ofdiseases.

South Korea - Nutrition App

A good example of how dementia wardsare designed differently from other roomsfor dementia patients enabling them towalk around. It uses soft colors, designedlighting, activity mattresses in roomyspaces with no corners.

USA - 5 Star Nursing Home Design

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Suggested Cases

Sweden - Silviasyster and Stjärnmärkt

Two different education programs inSweden that leverage care workers as acareer and motivates units to work in aperson-centered way through educatingmanagement. It ensures not only the rightthinking of work, but also gives status tothe organizations.

The National Health Service is planning totake over the management of care andbring it under one roof together with otherhealthcare services. The initial response isthat it will give a lot more credibility to thecare side and increase the respect to theprofile of the care workers.

UK - NHS plans to include care

How does Home Instead lift their careworkers during the pandemic and thechallenges they face in home care services.

US - Home care challenges in COVID

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A new movement in Scotland thatencourages people to decide how theircare budget can be deployed, so thatpeople can choose to go to a day carecenter if they want to.

Scotland - "Self Directive Support"

Partners

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