Tuesday, January 26, 2016

Work and Dementia

White Paper on Work and Dementia
Susan H. McFadden, Ph.D.
Professor Emerita, Psychology, University of Wisconsin Oshkosh
Research Consultant, Fox Valley Memory Project (www.foxvalleymemoryproject.org)

            Since its beginning in 2012, the Fox Valley Memory Project has recognized the need to attend to work-related issues for persons diagnosed with dementia, their care partners, and their employers.  In our initial grant proposal, we included a “workplace enrichment” component that focused on what we called “purpose and livelihood.”  This reflected our belief that all persons need a sense of purpose in life—something that is often thwarted by the stigma associated with dementia—and that younger individuals with dementia need a source of livelihood.  We also noted that persons in the early stages of dementia who are still employed might need vocational evaluation and job coaching as their symptoms became more apparent to themselves and others.  In addition, we cited the need for employer education. We believe that employers of all types—from retail to industry to service occupations—have a vital role to play in dementia-friendly communities. 

            Recognizing that Goodwill Industries of North Central Wisconsin already had expertise in these areas, we invited several representatives of Goodwill to partner with us.  They served on our initial small steering team and now one individual is a member of our Executive Coordinating Committee.  Staff at Goodwill have scheduled meetings with local human resources professionals as well as with CEOs of businesses in the Fox Valley region.  They have developed a job description for a part-time position to survey and educate employers, and to provide vocational evaluation and job coaching to employees.  Unfortunately, despite valiant efforts, it has been challenging to obtain commitments from employers to move forward toward becoming dementia-friendly and to obtain funding to support the part-time position.  Nevertheless, we remain committed to this component of our vision for the Fox Valley Memory Project.

            In the last few years, papers have started to appear in the research literature, articles have been published in newspapers, advocacy groups have offered advice for employers, and in the state of Wisconsin, the Department of Health Services has developed a website with information for employers of persons caring for individuals with dementia.  Nevertheless, many agree that more needs to be done.  For example, Roach and Drummond (2014) mention a “particular lack of research focused on younger people (under the age of 65 years) with dementia and virtually none focuses on the experience of the family unit” (p. 889).  Others cite a “dearth of high quality research” on job retention and work performance associated with dementia (Ritchie, Banks, Danson, Tolson & Borrowman, 2015, p. 24).  Finally, although there has been some effort to address workplace challenges for caregivers, “very little is known about how organizations deal with employees” who have dementia (Cox & Pardasani, 2013, p. 644).

In the following sections, I briefly summarize literature on work and dementia that addresses the needs of persons with the diagnosis, family members and employers.  Suggestions for meeting these needs appear in research studies and guidelines offered by international, national, and Wisconsin organizations. 

Addressing Needs of Persons with Dementia

            Often it is at work that people first note difficulties with memory, problem solving, time orientation, etc.  The seriousness of these problems and their outcomes vary depending on the nature of the work.  For example, it has been well documented that in the early stages of Alzheimer’s disease, people may experience declines in their capacity to manage finances at home and at work (Triebel et al., 2009).  However, in contrast to the accountant whose problems can affect the viability of the organization, some individuals work in jobs where people’s lives are at risk if they can no longer perform their jobs skillfully.  Safety concerns are paramount and must be addressed (Shaw, 2011). 

            Many of the families interviewed by Roach and Drummond (2014) stated that employers lacked understanding and made no effort to keep the individual in a job as long as possible.  Thus, cessation of work was often rapid and traumatic, causing tremendous psychological as well as financial stress for the families.  At home, out of a job, individuals felt like they were no longer useful to other people and their communities.  Often socially isolated because others in their age cohort were still working full time, some slipped into depression, which can exacerbate dementia-related cognitive problems. 

            Several researchers have suggested that greater effort should be made to enable persons to continue to experience meaning and purpose in life through volunteering, regular gatherings with social groups, and other activities that keep people engaged with others.  Others have examined the effects of programs that help people continue to work alongside a “work-buddy” who has undergone special training.  One such program at a hardware store in Australia was very successful and provided a sense of meaning not only to the person with dementia, but also to the workplace mentors (Robertson & Evans, 2015; Robertson, Evans, & Horsnell, 2013).

            Following a review of the literature and their interviews with persons diagnosed with dementia, care partners, and employers, Ritchie et al. (2015) concluded that “little advice, guidance, and good practice support is available to help people with dementia to remain in the labour market” (p. 33).  They called for greater focus on abilities retained rather than on deficits.  However, this would require a major shift in public attitudes about a condition that elicits so much fear in the general population.

            Communities seeking to become more dementia-friendly vary in many factors, including size, resources, and location (e.g., urban, suburban, rural).  However, persons living with dementia in these different communities share a vital characteristic with those who do not have dementia:  the need for a purposeful role in life, a role that most adults derive from their work and meeting the needs of their families.  Leaders in these communities need to:
·      Recognize that some individuals are experiencing dementia symptoms and receiving dementia diagnoses while still working and include them in planning and implementation of dementia-friendly practices
·      Educate employers about dementia and the types of reasonable accommodations they might make to keep people employed
·      Identify meaningful volunteer roles for those who no longer can meet the requirements of paid employment and educate organizations that provide these volunteer opportunities about the abilities of persons living with dementia

Addressing Needs of Families

            Although many continue to think of Alzheimer’s disease and other forms of dementia as an old persons’ disease, the Alzheimer’s Society of Canada found that 15% of Canadians with Alzheimer’s disease are not yet 65 (Black et al., 2010).  This contrasts with the US where it is typically claimed that 5% of persons with Alzheimer’s disease are diagnosed before age 65 (Gibson, Anderson, & Acocks, 2014).  The difference seems to like in diagnosis because in the US there is often at least a two-year or longer lag between the noticeable onset of symptoms and diagnosis. 

Employed dementia care partners fall into several categories.  Some are caring for a spouse/partner who is still in the workforce but struggling to hang onto employment.  Others care for loved ones who have been forced to leave work because of dementia, or who retired and then developed dementia.  Many are caring for parents or other relatives with dementia.  In addition, some care for multiple persons with dementia along with children still living at home.  The Wisconsin Department of Health Services (2015) reports that currently, 64% of dementia care partners are still employed.

A high percentage of care partners still in the workforce report that their work is disrupted because of caregiving responsibilities.  They use their vacation time to provide care, thus depriving themselves of opportunities to reduce stress.  They miss work, feel they are less effective on the job, and refuse promotions that would bring more responsibility and time commitments.  Many are forced to retire early which results in additional financial challenges (Black et al., 2009). 

            Caring for a person with dementia is costly.  Many families report not knowing about resources that might be available to help them.  They also have difficulty navigating the challenges of managing finances.  In one study conducted in Ohio, 21.3% of care partners were unemployed and frustrated in their attempts to find work while juggling caregiving responsibilities (Gibson et al., 2014).

            Cost of care should not only be calculated monetarily.  There is a psychological cost in watching a loved one respond to the loss of an occupation that had provided not only income, but also meaning.  In addition, even before the individual elects to leave work, or is forced to do so, there may be worry on the part of the family members about the person’s job performance.  For example, one woman described how worried she was that her husband—an accountant—would be liable for mistakes he made in his clients’ tax preparation.

            Communities seeking to be more dementia-friendly must acknowledge that meeting the needs of persons with dementia must also involve meeting the needs of their care partners.  Because many care partners are still employed, leaders in dementia-friendly community efforts should:
·      Educate employers about the challenges of being a dementia care partner
·      Identify employers that do a good job of responding to care partner needs and encourage them to be models for others
·      Schedule care partner support programs at times convenient for those still employed

Addressing Needs of Employers

            Few studies of employers’ knowledge and attitudes about dementia have been conducted, but one that surveyed 103 HR professionals revealed that over 70% had personal experience either with care partners or with individuals living with dementia.  On the job, they most often observed employees’ poor quality of work, lack of motivation, and absences due to dementia symptoms.  Only 2% had a written policy for employees struggling with cognitive impairment, while 29% had written policies regarding care partners.  Most did not feel comfortable talking about symptoms with employees and nearly all wished they had more education about dementia.  They also wanted to know more about the legal issues and possible liabilities for the organization that employs persons with dementia (Cox & Pardasani, 2013).

            In an effort to meet employers’ needs for more information, the Alzheimer’s Society in England has published a document called “Creating a dementia-friendly workplace: A practical guide for employers” (Alzheimer’s Society, 2015).  It provides excellent information about what it means to be a “dementia-friendly employer” that provides a “dementia-friendly workplace.”  This is not simply charity!  Many employers cited in this document recognize that despite cognitive challenges, their employees retain skills and knowledge that are valuable to the organization.

The Alzheimer’s Society guide addresses signs and symptoms of dementia and issues that commonly affect people, especially in the early stages when they may still be working. It offers a detailed discussion of the “reasonable adjustments” employers might make to enable persons with symptoms of dementia to remain at work longer and gives examples of various situations employers and employees might encounter when dementia becomes apparent.  Suggestions for reasonable adjustments fall into several categories:  the working environment, the working pattern (e.g., hours, duties), training, and supervision.  This document also recognizes that at some point there will need to be a discussion about the transition out of work and the kind of support that can be offered post-employment.  For example, some organizations have clubs for retired employees and club leaders can be educated in offering hospitality and inclusion to those with dementia. 

The Office of Disability Employment Policy of the US Department of Labor offers a service called the Job Accommodation Network (JAN).  JAN has published a document on accommodation and compliance for employees with Alzheimer’s disease (2013).  While not as detailed as the guide from the Alzheimer’s Society, it does provide information for US employers about the fact that some people with Alzheimer’s disease will be classified as having a disability and thus meet the requirements of the Americans with Disability Act (ADA) but others will not qualify.  Like the Alzheimer’s Society’s guide, JAN offers ideas for accommodation but frames them in terms of the challenges experienced by the employee in terms of memory, organization, time management, and difficulty performing job duties.  It also gives suggestions for employees and for employers as well as examples of people who have developed various solutions to work challenges caused by their dementia symptoms. 

Leaders of dementia-friendly community efforts need to become familiar with these and other resources to help employers and employees (both those with dementia and their care partners) dealing with dementia.  Because this is a topic that many employers are reluctant to address, one place to start would be to survey their employees about how dementia is impacting their lives.  The Wisconsin Department of Health Services’ “toolkit” for employers provides a link to an anonymous family caregiver survey developed by the UW Extension (http://articles.extension.org/pages/27975/employed-family-caregiver-survey).  Employers who administer it will receive an executive summary of the results that can be shared with employees. 

What Else can be Done?

            As stated earlier, the Fox Valley Memory Project has collaborated with Goodwill Industries to attempt to address employee and employer needs regarding dementia symptoms in the workplace.  So far, progress has been slow in this regard while at the same time, we’ve seen growth in other aspects of our mission like memory cafés, creative engagement programs, care partner support services, and Purple Angel training of local businesses about serving customers and clients with dementia.  The issues surrounding dementia in the workplace are going to grow in coming years as more people receive the diagnosis earlier.  It is time now to use the information already gathered by researchers and organizations like the Alzheimer’s Society, JAN, and the Wisconsin Department of Health Services to ensure that dementia-friendly communities include dementia-friendly workplaces. 

References

Alzheimer’s Society (2015).  Creating a dementia-friendly workplace: A practical guide for employers.  Retrieved from http://www.ageingwellinwales.com/Libraries/Documents/Creating_a_dementia-friendly_workplace.pdf

Cox, C. B., & Pardasani, M. (2013).  Alzheimer’s in the workplace: A challenge for social work.  Journal of Gerontological Social Work, 56, 643-656

Black, S. E., Gauthier, S., Dalziel, W., Keren, R., Correia, J., Hew, H., & Binder, C. (2010).  Canadian Alzheimer’s disease caregiver survey: Baby-boomer caregivers and burden of care.  International Journal of Geriatric Psychiatry, 25, 807-813.

Gibson, A. K., Anderson, K. A., & Acocks, S. (2014).  Exploring the serving and support needs of families with early-onset Alzheimer’s disease.  American Journal of Alzheimer’s Disease & Other Dementias, 29, 596-600.

Job Accommodation Network (2013).  Employees with Alzheimer’s disease [Accommodation and Compliance Series].  Retrieved from https://askjan.org/media/downloads/AlzheimersA&CSeries.pdf    

Ritchie, L., Banks, P., Danson, M., Tolson, D., & Borrowman, F. (2015).  Dementia in the workplace: A review.  Journal of Public Mental Health, 14, 24-34.

Roach, P., & Drummond, N. (2014).  “It’s nice to have something to do”: Early-onset dementia and maintaining purposeful activity.  Journal of Psychiatric and Mental Health Nursing, 21, 889-895.

Robertson, J., & Evans, D. (2015).  Evaluation of a workplace engagement project for people with younger onset dementia.  Journal of Clinical Nursing, 24, 2331-2339.

Robertson, J., Evans, D., & Horsnell, T. (2013).  Side by Side: A workplace engagement program for people with younger onset dementia.  Dementia, 12, 666-674.

Shaw, G. (December, 2011/January, 2012).  Dementia in the workplace.  Neurology Now, 8(6), 30-33.

Triebel, K. L., Martin, R., Griffith, H. T., Marceaux, J., Okonkwo, O. C., Harrell, L.,… Marson, D. C. (2009).  Declining financial capacity in mild cognitive impairment: A 1-year longitudinal study.  Neurology, 73, 928-934.


Wisconsin Department of Health Services (2015).  Dementia friendly employers toolkit: Caregivers in the workplace.  Retrieved from https://www.dhs.wisconsin.gov/dementia/employers.htm

Tuesday, September 8, 2015

25th Alzheimer Europe Conference

Reflections on the 25th Alzheimer Europe Conference
Susan H. McFadden, Ph.D.
Fox Valley Memory Project (www.foxvalleymemoryproject.org)
Wisconsin (USA)


Tuesday, January 13, 2015

Memory Cafés and Dementia-Friendly Communities Helpful Websites

Memory Cafés and Dementia-Friendly Communities
Helpful Websites
Compiled by Susan H. McFadden, Ph.D.
University of Wisconsin Oshkosh

Information about developing and operating memory cafés and the broader issue of creating dementia-friendly communities is rapidly proliferating online.  All of these links have been checked as of January, 2015.  If you have others to recommend, please contact me (susan.h.mcfadden@gmail.com).  Together, we can work to end the stigma and social isolation associated with dementia and move our communities and larger societies toward viewing dementia as a disability that can be accommodated with patience and kindness. 

Memory Cafés


            This site compares the evolving models of Alzheimer’s cafés and memory cafés and contains many practical suggestions for starting and running memory cafés.


            This is a guide to taking people living with dementia on outings.  More about Dementia Adventure and their work can be found here:  http://www.dementiaadventure.co.uk

Memory and Alzheimer’s Cafés in the UK:  http://www.memorycafes.org.uk

            This site lists the Memory Cafés in various parts of the UK and offers “A Guide to Setting up a Memory Café” -- http://www.memorycafes.org.uk/resources/GUIDE-SETTING-UP-MC.pdf

Rotarians Easing Problems of Dementia:  http://www.repod.org.uk

            Rotary Clubs in England provided early leadership and support for memory cafés.  They published the original guide for setting up a memory café and continue use their website to promote memory cafés and ideas for creating dementia-friendly communities. 


            This organization is run by Carole Larkin, a certified Geriatric Care Manager in Dallas, TX.  On this page, she lists Memory Cafés in the US and offers a brief “toolkit” for starting one.    

Dementia-Friendly Communities


            This page gives links to many documents about dementia-friendly communities.  The one called “Building Dementia-Friendly Communities: A Priority for Everyone” is based on interviews with people with dementia about what they most wanted from their communities.

Minnesota ACT on Alzheimer’s: http://www.actonalz.org/

            This organization has developed a detailed toolkit to help communities assess how dementia capable they are:  http://www.actonalz.org/toolkit.  ACTonAlz also has a page with many sources of information about dementia-friendly communities:  http://www.actonalz.org/dementia-friendly.  It includes information about memory cafés.


            This document deals primarily with environmental design that can help make communities more welcoming and easier to navigate for people with memory loss and confusion. 

Falmouth, England:  Dementia-friendly initiatives with local businesses:  http://www.falmouthmemorycafe.org.uk/P2586_3%20booklet.pdf

            Here’s an example of how one community in the Cornwall region in England has enlisted the support of a local Rotary Club to become more dementia-friendly, particularly in terms of how local businesses interact with people with dementia.

The Purple Angel:  http://www.purpleangel.org.uk/

            The Purple Angel is an international symbol indicating that a business or organization has received training in how best to meet the needs of people with dementia.  Here’s a website from the US that calls for greater awareness of the meaning of the Purple Angel:  http://www.alzheimersspeaks.com/purple-angel-project.  This website also has a section on memory cafés.  



Saturday, September 13, 2014

20th International Conference on Palliative Care

On September 9, 2014, John and I were honored to participate in a day-long seminar at the 20th International Congress on Palliative Care, held in Montreal.  John had met Dr. Thomas Hutchinson, the organizer of the seminar, at a meeting in Madison several years ago but did not realize that he directs the McGill Programs in Whole Person Care.  We don’t know if Whole Person Care programs exist in the US, but we hope there are at least a few.  

Although the discussion about end-of-life care planning has been toxically politicized in wrangling over the Affordable Care Act, recently there’s been good news that patients covered by Medicare may finally be able to have these conversations with their physicians.  These conversations should be a part of the medical care for persons of all ages and they are especially important when people receive a diagnosis of dementia.

Here is Tom’s description of the seminar:

Whole Person Care is caring for the whole person (body, mind, and spirit) with the purpose of facilitating healing.  But what happens when the mind begins to fade?  What happens to the person?  And what about healing in the context of dementia?  We will explore these questions through presentations, experiential exercises, and audience interaction.

The organization of the topics and speakers was brilliant.  Dr. Howard Chertkow began by presenting “The Facts:  Some Key Neurologic Data about Cognitive Impairment.”  Dr. Chertkow and his colleagues developed a quick screening test called the Montreal Cognitive Assessment, though he noted that doctors test memory while families are often more concerned about personality changes like the loss of humor, apathy, and depression.  Dr. Chertkow discussed the new testing being done for biomarkers (especially of Alzheimer’s disease) that appear long before symptoms.  This is the focus of much cutting-edge research aimed at discovering an intervention to delay or even prevent the onset of symptoms.  Dr. Chertkow is hopeful that better understanding of pharmacogenomics will enable clinicians to determine who may benefit from various drugs administered either before or after symptoms appear. 

From the neuropathology of dementia, the seminar moved directly to the experience of dementia.  Dr. Manuel Borod gave a moving talk about his family’s journey with his father through dementia.  He wove together insights from his palliative care practice with stories of his dad who maintained a radiant smile and loving sense of humor throughout the process of memory loss and accumulating confusion.  His talk reminded all of us in the audience how many of us have personal experiences of loving someone with dementia.

Then it was John’s turn to speak about the personhood of those with cognitive impairment and the ways that personhood has been defined through history.  John concluded his talk by pulling out his soprano ukulele and leading the seminar participants (about 200 persons) in singing “The Dutchman,” a song about a woman caring for her husband with dementia.  The chorus includes this line:  “Long ago, I used to be a young man, and dear Margaret remembers that for me.”  John and I like to say that someday I may be his Margaret, or perhaps he will be my Margaret.

From consideration of the person with dementia, we moved to a presentation on the family.  Dr. Cory Ingram, of the Mayo Clinic in Rochester, MN, spoke about different types of dementia:  in cortical types like Alzheimer’s there is an initial deficit in learning new information, but in subcortical types like progressive supranuclear palsy and Huntington's disease, there is a deficit in retrieving information as well as movement problems.  Throughout his talk about the ambiguities and ambivalences experienced by families caring for a person with dementia, Dr. Ingram played audio clips of a daughter talking about her care for her mom.   Dr. Ingram emphasized the question families are rarely asked:  “What is it OK to die from?” Too often, persons with dementia die under conditions of too much or too little medical care.

From the family, we moved to the community, and it was time for John and me to talk.  I began by describing the worldwide dementia-friendly community movement, noting that the literature on dementia-friendly communities often omits any discussion of dying, death, and palliative care, while the palliative care and hospice literature often omits discussion of the needs of persons with dementia.  I don’t think I would have realized this so clearly if we hadn’t been invited to participate in this seminar.  John concluded the presentation by describing the work of the Fox Valley Memory Project and the educational programs offered by the Fox Valley Coalition for End-of-Life Care.  As we developed our talk, we referred often to our notes from the conferences on palliative care and dementia presented in Appleton in the mid-2000s by Dr. Abhilash Desai (now head of the Idaho Memory and Aging Center).  Dr. Desai and his colleagues were most definitely engaging in Whole Person Care! 

After a break, nearly everyone returned for a panel discussion led by Dr. Hutchinson.  He teared up a bit as he spoke of his mom dying with dementia, and about the highs and lows of hope.  He asked the audience to get into small groups to talk about their experiences along this up and down line of emotion through time.  One by one, audience members told moving stories of their experiences with persons with dementia.  Often, we panel members had nothing to add except a word of thanks for the courage of storytelling.

John and I are deeply grateful that we had this opportunity to meet such outstanding caring palliative care physicians.  Knowing that they are so committed to the idea that good quality of life includes planning for good quality in dying gives us hope.  Here’s what our last slide said about this:

A dementia-friendly community will support people with the diagnosis, their care partners, and their paid caregivers throughout the course of the dementia in the difficult discussions necessary for a good death.  “The good death is the continuation of a good life until it is no more” (Kastenbaum, 2004, p. 125)
 





Tuesday, October 15, 2013

Five themes from presentations and discussions


As I (Susan) sifted through the program and my notes, I came up with five themes that functioned like a repeating musical line.  If you’re been reading some or all of these blog posts you’ve probably noted these, for we’ve referred to them several times.  Others attending the same conference may have different ideas on repeating motifs, but here are mine.

1.  Persons living with dementia must be involved in all phases of planning, implementation, and evaluation of programs and services.  Well-meaning academics and professionals should never act as if by virtue of their education and training, they know what people living with dementia want and need. 

2.  Persons living with dementia around the world repeatedly tell researchers, policy makers, and program professionals that they want more opportunities for stigma free social interaction.

3.  When communities are intentional about improving dementia attitudes, services, and programs, persons with the diagnosis can maintain a good quality of life.  This is not to say there won’t be suffering, but taking the approach that we’re all in this together will go a long way to ameliorating some of the suffering, especially when it’s caused by social isolation. 

4.  Creation of dementia friendly communities and societies will take collective will at national, regional, and local levels.  It’s not an either/or.  Some policies and programs need the weight of national governments behind them; others will begin in neighborhoods.  International cooperation and open exchange of ideas is crucial as well. 

5.  We must begin to address the complexities at the intersection of the desire for dignity and the desire for autonomy.  All of us are vulnerable creatures needing care from others that promotes dignity.  People with dementia experience an extra load of vulnerability that changes with the progression of the condition.  We need to look carefully at how we balance the wants, needs, and declarations (as in advance directives) of the “then self” and the “now self.”  This will not be easy and will require persons with dementia to collaborate with philosophers, theologians, artists, social scientists, medical professionals and others. 

This last point leads me to look ahead to the Alzheimer Europe meeting in Glasgow, Scotland, in October, 2014 where the theme will be “Dignity and Autonomy.”  Whether you’re struggling with the question of your father’s driving (e.g., taking away his dignity along with his driver’s license, or allowing him autonomy to make decisions about his driving capability) or you’re wrestling with life and death questions about treating pneumonia with antibiotics (e.g., knowing your wife signed a living will years ago and stated she never wanted to “be put in a nursing home,” but nevertheless she’s been happy living in a high quality memory care residence), you are living at the cusp of two major—and sometimes competing—challenges of life the 21st century.  Thankfully, the good people who organize the Alzheimer Europe meetings are providing a forum for these difficult discussions.

Can it really be this simple?



I (John) focused particularly on presentations by persons with dementia.  As mentioned in an earlier post, the Dementia Working Group that was formed only a year ago now includes persons with dementia from 11 European nations. They are not waiting passively for society to toss them the occasional crumb – the Dementia Rights movement is gaining steam, and I hope it will find its way to American shores soon.

A gentleman from Scotland shared his remarkable story.  After being diagnosed with Lewy Body dementia he sunk into a period of depression and withdrawal; his “dark year,” he now calls it.  Then he and his wife hitched up their figurative pants and began making calls on their neighbors, explaining his circumstances.  They visited 30 homes near their own.  “As a result,” he explained, “I found I now had 60 sets of eyes watching over me, there to help if I became lost or had other difficulties.”  Then they began making visits to the shops and businesses he had long frequented, beginning with the newsstand, the post office and the supermarket.  “Now if they see me staring blankly, people help me sort out what I came in for.  They put my items into my bag.  They count out my money and give me my change.  They have given me back my life.”

Can it really be that simple?  Perhaps more so in a smaller community, but people really do want to be kind and helpful.  But before they can be helpful, they need to understand the situation, and it takes courage to overcome the fear of being stigmatized and ask for that help. 

A related conversation that unfolded in our final plenary focused on businesses that declare themselves “dementia friendly” and so identify themselves with a sign in the window.  The largest-scale effort of this type is in the U.K., fostered by the Dementia Action Alliance, and their chosen logo is a purple angel.  It can be found in shops, churches, and places of public accommodation.  Other nations employ different logos, but the purple angel seems poised to become the most universal.

But precisely what does it mean for a business to declare itself dementia friendly?   At a very minimum it means that a business publically declares that persons with memory loss of cognitive challenges are welcome there, but some worry that it may be entirely too easy to make such a declaration simply for the sake of public relations or competitive advantage (“Our bank is dementia friendly while the bank down the street is not!”).  Is there a commitment to training employees to recognize signs of dementia and extend hospitality and support?  How much training, and provided by whom?  Would such a declaration extend to thinking through the physical layout of the business to make it less confusing to persons with dementia?  Who should set the standards, if indeed there should be standards at all?

Which brings us back to the Dementia Working Group.  In the end, it was argued, only persons with dementia are equipped to determine whether an establishment is dementia friendly.  What we need, in other words, are dementia activists who will provide education, feedback, and constructive criticism.  As the Working Group proclaims, “nothing about us without us!”

Approaching local businesses has been on my screen for some time as a focus for the Fox Valley Memory Project, but there have been so many other initiatives to get up and going.  But I am ready to open this conversation in our region, beginning with the downtown Appleton business community.  The Americans with Disabilities Act ensures that all of our businesses are accessible to persons with physical limitations.  Now it is time for these businesses to take steps to make themselves equally accessible to persons with dementia and those who care for them.