Dementia-Friendly Community Evaluation Guide

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Dementia-FriendlyCommunityEvaluation GuideThis Guide was developed withgrant funding from AARP1

ForewordDementia Friendly America (DFA), since its outset in 2015,has sparked and supported communities in their pursuitto become better places for people living with dementiaand their care partners to reside. DFA guides communitiesthrough the comprehensive process of convening anaction team, identifying community needs, prioritizingthose needs and developing an action plan for ensuringa more dementia-friendly community. However, untilnow, there has not been guidance to help communitiesin the United States evaluate the impact of their work.Even internationally, with some countries having a longerhistory with dementia-friendly communities, there havebeen limited outcome evaluations of dementia-friendlycommunity initiatives. For this reason, the NationalAssociation of Area Agencies on Aging, which administersboth Dementia Friendly America and Dementia FriendsUSA, is incredibly grateful to AARP’s Office of Policyand Brain Health and AARP International for funding thedevelopment of this important new tool, this DementiaFriendly Community Evaluation Guide.Most dementia-friendly community efforts in the UnitedStates are grassroots initiatives oftentimes with fewfinancial resources, and driven by staff, volunteers, peopleliving with dementia and care partners who need practicaland hands-on materials to help them launch and sustaintheir efforts. What had been missing until now is a tool tohelp dementia-friendly communities evaluate their efforts.Communities across the country working on dementiafriendly community efforts have been requesting moreinformation on evaluation and DFA is very pleased to nowhave this new resource.The goal of this Evaluation Guide is to assist leads ofdementia-friendly community initiatives in evaluatingthe effectiveness of their dementia-friendly community’sactivities. The Guide provides straightforward steps andvalidated tools that have been standardized to help youevaluate your dementia-friendly community effort withtrusted measures.At Dementia Friendly America, we believe that everyinitiative can evaluate something and ideally more thanone thing! Evaluation reaps many benefits. It helps youunderstand what is working, but also what is not working.It helps you adjust your work plan as needed. It also helpsyou communicate the importance of the work to yourpartners, funders, local government, communitymembers, care partners and most importantly, peopleliving with dementia in your community.By evaluating individual activities that are part of yourdementia-friendly community, you will be able to builda story of how your dementia-friendly communityefforts are helping to foster a more dementia-friendlycommunity, foster innovation and insights among othercommunities that are pursuing dementia-friendlycommunity efforts.Evaluation should be an iterative, ongoing process. As wecontinue to learn from dementia-friendly communities’application of the Evaluation Guide, Dementia FriendlyAmerica will develop and incorporate new tools andresources to support the dementia-friendly movement.As we embark on this work, we will keep our stakeholdersapprised of new developments that may further amplifythis Evaluation Guide. Ultimately, Dementia FriendlyAmerica hopes to work collaboratively with dementiafriendly community efforts to foster sufficient outcomeevaluation information at the local level to help us developa broader national evaluation strategy. The evaluationinformation that we collect locally and translate nationallywill continue to build on and support the momentum fordementia-friendly communities across the country.Please contact the DFA team at info@dfamerica.orgto brainstorm evaluation strategies, problem solvechallenges and ultimately, to share your dementia-friendlycommunity’s outcomes and impact.Thank you for doing everything you do to move yourcommunity forward to be more dementia-friendly!Sincerely,Sandy MarkwoodCo-Chair, Dementia Friendly AmericaChief Executive Officer, National Association of AreaAgencies on Aging2

Table of ContentsIntroduction4Key Principles of Dementia-Friendly Communities 5Dementia-Friendly Community Goals 6Evaluation of Dementia-Friendly Communities 6Getting Started 7Description of Key Goals, Examples of Activities, Outcomes and Measurement Methods11Appendix A: Evaluation Plan (Template) 17Appendix B: Communicating Your Findings17(Adapted from European Foundations’ Initiative on Dementia (EFID)Toolkit for Planning, Reflection and Learning)Appendix C: Table of Tools to Measure Common Outcomes18Acknowledgements 19References203

IntroductionAs the number of people living with dementia increases in the UnitedStates, creating dementia-friendly communities is one way to provide theinfrastructure and support that can enable people affected by dementia tocontinue to participate in and live well in their communities.Although definitions of a dementia-friendly community vary, a common goal isto create a better quality of life for people with dementia and their families bydecreasing stigma, increasing opportunities for meaningful social interactionand offering support in addressing the changing needs of people living withdementia. This goal can be achieved by including people living with dementiaand their families in dementia-friendly community efforts and by integratingtheir wants, needs and preferences into the planning and implementation ofthese efforts.Dementia Friendly America (DFA) is a national initiative that serves as a hubfor the development and spread of dementia-friendly communities across theUnited States and is the U.S. licensee of the global Dementia Friends program.1, 2Dementia Friendly America fosters community transformation by offering theDementia-Friendly Community Toolkit, supplemental resources, and technicalassistance designed to equip communities to better support people living withdementia and their families.3, 4, 5Even with the wide range of dementia-friendly community efforts across theworld, there is no set approach for evaluating the impacts of those efforts oncommunities and community members. This Evaluation Guide provides tips,strategies, examples and resources for measuring the outcomes and impactof dementia-friendly community activities.4

Key Principles of Dementia-FriendlyCommunitiesThere are key principles to consider when creatinga dementia-friendly community. In many instancesdementia-friendly communities are focused ongeographic areas, but there are also dementia-friendlycommunity initiatives defined by race or ethnicity, religion,culture, shared background or interest (e.g., young onset).No matter how you define “community,” each principleis relevant. Dementia-friendly community initiatives areongoing and dynamic initiatives—dementia-friendlinessis not a “yes” or “no” characteristic of a community, butan aspirational goal that individuals, organizations andgroups continuously strive toward over time.Principle 1: Include and involve people living withdementia in the community effort.People with dementia and their families should besupported and actively engaged to identify local prioritiesbecause they can provide valuable information on whatis working well within a community and what needsto change. Only by ensuring that there is meaningfulinvolvement of people living with dementia and theirfamilies atall stages ofdementia-friendlycommunity efforts,Learn how to involvewill a dementiapeople with dementiafriendly communityin the communityinitiative succeedeffort by reviewing thein achievingDementia Engagementinclusiveness andand Empowermentimproved qualityProject guides.6of life.Principle 2: Establish and maintain a team that workscollaboratively to create change.Creating change in a community cannot be accomplishedwithout establishing and maintaining an effective planningteam that works collaboratively. The team, with a sharedunderstanding of dementia-friendly community goals, isan asset that willhelp to engage thewider communityReview the DFAto increaseCommunity Toolkitawareness andPhase 1 for tipschange the wayon convening anthe communityaction team for yourthinks about livingdementia-friendlywith dementiacommunity.in positive andinclusive ways. Nosingle organizationcan be responsiblefor change acrossa community.75

Dementia-Friendly Community GoalsThis section provides a list of key goals that are common among dementia-friendly community initiatives. Some dementiafriendly communities work toward one or two goals while others work on several or all goals. As communities work towardachieving each goal, it is critical to consider including representation from diverse members of your community in helpingto shape the initiative and then engaging with diverse partners and settings. Throughout the activities listed for each goal,we have suggested activities that include diverse aspects.Key Goals Among Dementia-Friendly Communities1.2.3.Increase awareness and understanding of dementia and of people living with dementia.Increase awareness and understanding of brain health and risk reduction.Collaborate with public, private, nonprofit and health care sectors to better serve people living with dementia andcare partners.4. Address the changing needs of people with dementia and care partners.5. Create a supportive social, cultural and business environment that is inclusive of those living with dementia.6. Improve the physical environment in public places and systems (e.g., parks, transportation) so that it is dementiafriendly.Page 11 provides example evaluation activities for each of these key goals.Evaluation of Dementia-Friendly CommunitiesBased on a literature review of dementia-friendly community research conducted by DFA in the fall of 2020, dementiafriendly community evaluations to this point have been largely descriptive and focused on the process of planningand implementing a dementia-friendly initiative. For example, currently available evaluations provide rich detail of howinitiatives were set up, barriers and challenges to implementing activities, how many people participated in awarenessraising activities and the number of activities offered in a community.This Evaluation Guide is intended to provide community leaders and evaluation partners with tips and strategies on howto measure common outcomes of activities. There are many benefits to evaluating the outcomes of dementia-friendlyactivities: To have evidence of the successes and challenges in creating community change.To motivate stakeholders (people with dementia, care partners, community leaders, media and funders) to investtime and resources in supporting the work.To help communities recognize their own abilities to bring about change.To have information to celebrate, make adjustments and communicate lessons learned.To inform the work of Dementia Friendly America in supporting communities across the country and engaging withfunders.To help clarify and prioritize project goals among partners and stakeholders.The findings of an evaluation will help tell the story of the impact of your dementia-friendly community’s efforts that canbe shared with people with dementia, care partners, community members and other stakeholders. The findings may helpto energize or re-energize your community efforts. And, ultimately, a well-structured evaluation will help to improve andsustain your dementia-friendly work.6

Getting StartedWhether your community is considering taking actionto become dementia-friendly or has some years ofexperience working to become more dementia-friendly,this Evaluation Guide provides information that is useful,practical and adaptable at any stage of your dementiafriendly community initiative.Creating a Plan: Five StepsReview the Evaluation Guide at the beginning of a newdementia-friendly activity (e.g., new program, new trainingeffort). The best time to create an evaluation plan isbefore you implement an activity. Not all communitieswill have the capacity to conduct an evaluation of allactivities; however, every initiative can identify one or twokey activities to evaluate. The earlier your communitydevelops an evaluation plan, the greater the potential forreaping the evaluation benefits, as described earlier. Takethe following steps when creating an evaluation plan.Step 1. Form an Evaluation TeamStep 2. Identify Activities toEvaluateStep 3. Identify Outcome MeasureTool or Measurement MethodStep 4. Create the Evaluation PlanStep 5. Communicate Findings7

Step 1: Form An Evaluation TeamIdentify key stakeholders, including persons living with dementia and care partners, who are interested in participatingin a planning team that will oversee an evaluation effort. Ensure diverse perspectives are represented. Determine ifthe evaluation will be conducted by a group of community members (e.g., staff and volunteers) by collaborating withresearchers (e.g., from a local college or university or public health entity) or a combination of both.Step 2: Identify Activities to EvaluateCommunities using DFA’s Community Toolkit are encouraged to complete a community assessment, identify strengthsand gaps, and engage the community to identify activities and initiatives to undertake in their dementia-friendly efforts.8, 9Every community is unique in the activities and initiatives it will undertake. The planning team should review the activitiesand initiatives identified and determine what or which ones will be evaluated. Some stakeholders (especially funders) maydefine the activities they want to be evaluated.To help determine the activities to evaluate, revisit what you would like to achieve in your dementia-friendly efforts. Howwill the proposed activities help your dementia-friendly community achieve its goals? Who is the target audience you willreach with an activity (e.g., people living with dementia, care partners, community members, professionals) and what doyou want to learn?Step 3: Identify An Outcome Measure Tool or Measurement MethodAppendix Ccontains a list ofcommon tools thatare valid, reliableand in the publicdomain.Next, select the measure tool or method that will gather the information needed to gain adeeper understanding of the outcome of the dementia-friendly activity. In selecting the toolor method, consider who you will obtain information from (e.g., person living with dementia,care partner, community member, professional). Determine who will collect the data andwhether training is needed on how to administer the tool. Decide how the informationis best gathered (e.g., telephone interview, paper survey, electronic survey), when theinformation will be collected (e.g., one-time, before and/or after the activity) and who willanalyze or summarize the information (e.g., volunteers, university colleague, intern).Step 4: Create and Implement the Evaluation PlanThis section describes the items to be included in an evaluation plan, including activities, outcomes and tools andmeasurement methods. Some evaluation teams benefit from using a logic model to guide the development of theirevaluation plans. Below is a simple logic model that also aligns with the sample evaluation plan in Appendix A.Logic Model: Dementia-Friendly CommunitiesGoal: What doesthe communitywant to achieve?Activity: Whatactivity or initiativewill be offered?Outputs: Howmany people willparticipate or howmany events of theactivity will occur?Outcomes: Whatchange do youexpect as a resultof the activity?8

Activities are examples of initiatives, programs orinterventions that your dementia-friendly communityplans to evaluate. This Evaluation Guide includes acollection of ideas from communities’ dementia-friendlyefforts. Your evaluation plan will contain activities thatbest represent and support your local community.Outcomes are the impacts of an activity, initiative,program or intervention. In practice, every activity,initiative, program or intervention should achieve anoutcome. Individual level outcomes examine how muchor what kind of difference the activity has made for theparticipant.Outcomes from activities targeting people living withdementia, care partners and community members mayinclude changes in: AttitudesAwarenessHealth outcomesInclusionKnowledgeLonelinessQuality of life of the person with dementiaQuality of life of the care partnerStress or burdenDelivery of community-based servicesThere are awide variety ofAn outcome is differentoutcomes that afrom an output, whichcommunity maycounts the number ofchoose to evaluate.participants or numberThis Evaluationof activities. OutcomesGuide focuses onrefer to the results ofkey outcomes thatactivities.are relevant acrossmultiple dementiafriendly activities,initiatives,programs, or interventions. You may identify otheroutcomes that you wish to measure that are not specifiedin this Evaluation Guide.resources (e.g., usingexisting data) as well asmethods that requiremore effort/resources(e.g., conducting a focusgroup) but may providemore comprehensiveinformation.There are severalmethods to measure outcomes. Quantitative methodsinclude outcome measures or surveys/questionnairescreated by researchers or the community. A communitycould also examine existing data such as measures ofchange in program utilization.Qualitative methods include information from focusgroups, individual interviews, or meetings with keyinformants.A focus group is a specific method for gathering moredescriptive information than you would obtain throughan outcome measure tool or survey. Decide whether youhave the expertise to conduct a focus group or whetheryour community needs to hire an experienced facilitator.Conducting a focus group takes time and resources toidentify questions, recruit participants, conduct the groupand analyze findings.When used together, quantitative and qualitative methodsoffer unique insight and solid understanding of outcomes.Next, take the information the evaluation planning teamhas discussed in Steps 1 – 3 to write an evaluation plan.An evaluation plan template is available in Appendix Aand is organized by: Tools and Measurement Methods are used to measureoutcomes. The tool or method will be based on theoutcome you want to measure. The Evaluation Guideincludes methods that may require less effort and/orGuide to Organizingand ConductingFocus Groups forPeople Living withMemory Loss andFamily Caregivers 10 Goal: What does the community want to achieve?Activity: What activity or initiative will be offered?Target Audience: Who will participate in theactivity or initiative (e.g., persons living withdementia, care partners, community members)?Outputs: How many people will participate or howmany events of the activity will occur?Outcome: What change do you expect because ofthe activity?Tool or Method of Measure: What tool or methodof measure will be used?9

Creating a dementia-friendly community is a fluid andongoing process. The planning team should considerusing a manageable and “rolling” evaluation plan tocapture the impact of the work at different stages in theprocess. For example, the evaluation team could identifyone to three activities to evaluate after year one andothers after year two.Implementation of the evaluation plan will vary based onthe activities, methods and tools that are part of the plan.Evaluation teams areencouraged to meetregularly to learn howIt is not alwaysthe evaluation processrealistic tois working and to learnobtain evaluationpreliminary results ofinformation fromthe evaluation. Theseeveryone whomeetings may identifyparticipates in anchanges needed inactivity or initiativemethods or tools, orover the long-term.the team may learnIf the same activityabout early successis offered over aof dementia-friendlyperiod of time, youcommunity efforts.may wish to developa sampling strategy.Step 5:CommunicateFindingsCreate acommunications planthat will describethe results to beshared, how they willbe communicatedand who they will becommunicated to.Appendix B includesquestions to helpyou think about howto communicateevaluation findings.10

Description of Key Goals, Examplesof Activities, Outcomes andMeasurement MethodsBecoming dementia-friendly has the power to change theway we think about living with dementia. By addressingthe goals in this Evaluation Guide, and engaging peopleliving with dementia and other stakeholders we cancreate a culture of respect and inclusion for people livingwith dementia.Appendix Ccontains a list ofcommon tools thatare valid, reliableand in the publicdomain.This section describeseach dementiafriendly communitygoal, lists examplesof activities fromcommunities workingto become dementiafriendly, outcomes andmeasurement methodsto consider.Goal 1: Increase awareness and understanding ofdementia and of people living with dementia.This goal focuses on increasing awareness andunderstanding of dementia and of people living withdementia. Through awareness building activities,individuals can become more knowledgeable about thetypes of dementia, signs and symptoms of dementia, andwill be better equipped to engage and assist people livingwith dementia.Activities Implement the Dementia Friends USA program.11 Offer dementia-friendly business12 andorganizational training, ensuring that diversespeakers and businesses are included in yourinitiative. Offer training for first responders, such as lawenforcement, fire department and emergencymedical services. Work with schools to raise awareness of dementiaamong younger people and educators aboutdementia. Partner with a place of worship to offer dementiaeducation sessions. Invite someone living with dementia to speak to acommunity group.Implement a communications strategy to reducestigma and increase community awareness thatis culturally competent and inclusive (publicawareness campaigns via print, social media,radio, tv, etc.).OutcomesChange in participant: awareness, attitude, knowledge,stigma, empathy and inclusion.Measurement MethodsSurveyDistribute attitude or knowledge surveys to attendeesbefore and after an educational or awareness buildingevent (e.g., theatrical play about memory loss). SeeTools in Appendix C for examples of possible questions.Possible questions/items may include: People with dementia need to feel respected, justlike anyone else. Do you strongly agree, agree,disagree, or strongly disagree?Dementia is part of normal aging. True or false?People with dementia should be able toparticipate in the community. Do you stronglyagree, agree, disagree, or strongly disagree?InterviewInterview public health practitioners and staff andpractitioners from organizations focused on Alzheimer’sand dementia, aging services, or caregiver services aftera public awareness campaign. Questions/items mayinclude: What changes have you seen in the numberof people reaching out to your organization(e.g., through phone calls or website visits) forinformation or services since the start of thecampaign?What changes are your staff reporting in theinterest and questions from the community sincethe start of the campaign?What information or services are now beingrequested?11

Participants may not be comfortablecompleting a survey or questionnaire online.Consider calling the participant to administerover the phone or mailing a survey with a returnenvelope.Goal 2: Increase awareness and understanding ofbrain health and risk reduction.There is increasing evidence on the importance of brainhealth in maintaining cognitive function. The Centers forDisease Control and Prevention (CDC) also supportsthe concept that healthy bodies are related to healthierbrains.13 Specifically, conditions including heart disease,history of a stroke, and chronic obstructive pulmonarydisease, are most associated with memory problems.14The GlobalCouncilonBrainHealth.org 15 provides freeevidence-based resources on brain health and riskreduction through modifiable lifestyle choices likediet, exercise, and social and cognitive engagement.Dementia-friendly communities can have a role indisseminating information on brain health and riskreduction strategies.brain health and risk reduction can contribute to changesin population behavior shown through the BRFSS.Focus GroupA few weeks after a brain health summit or an educationsession on improving brain health, bring together a groupof attendees for a focus group about what behaviorchanges they have made based on what they learned.Possible questions/items may include: What learnings from the educational event havethey retained?What behavioral changes have attendees tried?[Prompt with examples if needed (e.g., strategiesto better control blood pressure/lower sodiumdiet, more cognitive exercises, more physicalexercises/activities).]What behavioral changes will attendees expect tocontinue?If changes don’t seem possible, what are thebarriers?Activities Work with the local school district or stateeducation department to include brain health inthe educational curriculum. Host a brain health and dementia summit. Educate the community on ways to improve brainhealth, such as partnering with a local health fairworking with diverse audiences (e.g., AfricanAmerican community, Latinx population, women,Native American communities, youth groups).OutcomesChange in participant awareness, knowledge, behaviorchanges (physical activity).Measurement MethodsPublic Health MonitoringA state can monitor data on health-related behaviorsof its population (e.g., amount of physical activity,hypertension awareness/blood pressure control) throughthe Behavioral Risk Factor Surveillance System (BRFSS).16Over time, education and awareness campaigns about12

Goal 3: Collaborate with public, private, nonprofit andhealth care sectors to better serve people living withdementia and care partners.This goal focuses on engaging public, private, nonprofitand health care sectors to increase communicationand identify opportunities to collaborate to better servepeople living with dementia and their care partners, whilesupporting the interests of various community sectors. Asa result of this ongoing communication and collaboration,sectors of the community will become more aware ofexisting services and identify opportunities to worktogether to better serve people living with dementiaand better meet the mission of their businesses andorganizations. The collaboration could also result increating new or more services to fill gaps. People livingwith dementia, their families and care partners will haveincreased choice and opportunities.Activities Create a directory of private, public andnonprofit resources and services available in thecommunity (print or online) accessible to peopleof different cultures, languages and educationallevels. Collaborate with diverse organizations within thecommunity to tailor directories to be relevant totheir needs. Launch a referral process between health careand community-based services. Engage with partners to identify barriers,challenges and frustrations they face in becomingmore inclusive to people living with dementia andtheir care partners. Partner with first responders/local government onan outreach initiative, such as developing a file oflife or identification bracelet program.Outcomes Changes in programs, such as a new or modifiedservice. Changes in policies, such as a new or modifiedpolicy. Changes in practices, such as a new or modifiedpractice.Measurement MethodsProgram InventoryConducting an inventory of programs and servicesis a useful way to understand what is available in acommunity. This can be a way to identify gaps and beginconversations on how those gaps can be filled.A dementia-friendly community could distribute a surveyto its members. Questions/items may include: The overall goals of this coalition align with themission of my organization. Do you strongly agree,agree, disagree, or strongly disagree?My organization’s participation in this coalitionis a benefit to our clients. Do you strongly agree,agree, disagree, or strongly disagree?My organization’s participation in this coalition is abenefit to our employees. Do you strongly agree,agree, disagree, or strongly disagree?InterviewInterview organizations about barriers, resources andlessons they have learned or experienced.Determine the scope of your program inventory.Identify a clear method of how you will searchfor or identify programs. Record your findings ina way that serves your purpose.Goal 4: Address the changing needs of people withdementia and care partners.This goal seeks to address the changing needs of peoplewith dementia and care partners by providing services,programs and support through the progression ofdementia. It also includes offering education for peoplewith dementia, care partners, families and friends ontopics such as types of dementia, financial and legalplanning, health and wellness and planning for end-of-lifecare.13

Activities Provide post-diagnostic support services forpersons with dementia and their care partners. Provide evidence-based or evidence-informedprograms for people with dementia, care partnersand families.17, 18 Host Memory Cafés for people with dementia andcare partners.19 Offer support groups for people with dementia,care partners and family members. Recruit diverse facilitators and promote supportgroups in diverse settings within your community. Offer respite services for care partners.Outcomes Changes in participant (person with dementia):quality of life, skills, choice, knowledge, loneliness. InterviewInterview persons with dementia and their care partnersa few weeks after they received post-diagnostic supportservices. For persons with dementia and care partners,possible questions/items may include: Changes in participant (care partner): quality oflife, burden, mastery, competence, personal gains,well-being, skills, support, health, knowledge,loneliness. Measurement MethodsSurveyDistribute qu

efforts are helping to foster a more dementia-friendly community, foster innovation and insights among other communities that are pursuing dementia-friendly community efforts. Evaluation should be an iterative, ongoing process. As we continue to learn from dementia-friendly communities’ application of

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