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 (firstname.lastname@example.org). 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.
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
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.
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 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
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
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
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
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
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
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:
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)
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
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
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
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.
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
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
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
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.
John and I have agreed on topics for overview blogging about
the conference. We work very
differently. Ever the academic, I took
27 pages of notes (complete with references that I want to track down when we
get home) and he ended up with 1 page.
While I seek data, he seeks stories and while I construct themes from
data (qualitative researchers, you know what I’m talking about), he reflects
philosophically about ideas.
Our four concluding blogs will be organized like this. I’ll briefly describe a few national and
regional dementia friendly community initiatives. I’ve had to be selective because I don’t want
this post to be overly long. Later, I’ll
talk about five big themes I observed underlying the plenary speeches, session
lectures, and posters. John will relate
one story as he heard it from a man with Lewy Body Disease, and he will reflect
on what he envisions as “dementia friendly on the ground.”
1. Belgium has a program to develop
dementia friendly cities. Persons with
dementia and their care partners are integral to the planning and execution of
the program. Youth organizations also
participate. One stated goal is to
ensure the “right to be different.” Such
tolerance will benefit not only persons living with dementia but should also
generalize to people with mental health problems, developmental disabilities,
and other socially marginalized characteristics.
2. “On October 20,
2013, everybody in Norway will know
what dementia is.” This audacious
statement appears on a pamphlet describing how every year since the 1970s, the
Norwegian National Broadcasting system has run a telethon. This year, the focus will be on
dementia. In a country with a population
of 5 million, over 100,000 volunteers will visit every home in Norway (about
2.2 million) within 2 hours to collect funds and distribute information in
conjunction with the 8-hour telethon.
The program has three goals: (1)
to encourage activities to improve quality of life, especially through
volunteers serving as “activity friends,” (2) to increase public knowledge and
create meeting places for people with dementia, and (3) to support research on
prevention and treatment.
3. In Japan, over 4 million people have taken
a 90-minute training on awareness that dementia is a medical condition
affecting may people. Many of these
trainees are young and have signed on to be “dementia friends”; some recent
national research has shown a drop in stigma.
Interestingly, the Japanese have paid particular attention to men caring
for their wives or mothers. They
observed that men in that country get embarrassed about having to do things
like take a woman to a public toilet, or to buy her underwear or other personal
items. Thus, they’ve promoted a widely
recognizable pin that says merely “I am caring now” and is intended to elicit
compassion and help from strangers.
4. In Great Britain, a similar effort is
underway to create a cadre of “dementia friends” and “dementia champions” (persons
who train others). The Prime Minister,
David Cameron, has been a key advocate, and he’s the one responsible for
organizing the G8 summit in London that will address dementia (we hope) in
1. People in Motherwell, Scotland, have developed an
excellent small folded brochure the size of a business card that contains 14
practical suggestions for business owners to make their shops or services
dementia friendly. The organizing idea for this project is that
“no one should have to deal with dementia alone.”
2. In Huddinge, Sweden, researchers are
studying “zebra crossings” for pedestrians with dementia. Even if you don’t have dementia, when trying
to do this, you need to process so much information quickly. Making street crossing safer for people with
dementia will make them safer for all.
3. The Alzheimer’s
Society of Ireland is awarding
grants to 8 communities for 3 years who will raise awareness about dementia,
and will develop arts and cultural activities, educational and
intergenerational activities, volunteer opportunities, and access and
participation in sports and leisure activities.
They will also have to show how they are promoting dementia tourism. Throughout the planning and implementation of
these programs, communities will have to consult with persons with dementia
regarding these adaptations of the social and physical environment.
4. In Vienna, Austria, pharmacies are
collaborating on how they can be more dementia friendly.
5. The British organization,
Dementia Adventure, has recently developed an outdoor activity for persons with
dementia at a large park by a loch in Scotland.
6. The ACT on
Alzheimer’s organization (www.ACTonALZ.org)
in Minnesota has a free toolkit
available online for communities to assess how dementia capable they are and
how they might improve physical and social environments to raise quality of
life for people living with dementia.
7. And finally, I
need to include what’s happening in the Fox Valley region of Wisconsin, where the Fox Valley Memory Project has a multi-faceted
approach to meeting the changing needs of persons living with dementia (www.foxvalleymemoryproject.org). John and I presented a poster outlining our
various programs and services.
Our morning began with the poster session where we had a
number of good conversations with people about what we’re doing in the Fox
Valley region of Wisconsin to create a dementia friendly community. The day ended with a keynote address in which
a British psychologist spoke about working toward a dementia friendly society.
A question we need to consider further is how public policy to this end
will benefit all persons, not just those whose lives are touched in various
ways by dementia.
One session Susan attended later reminded her of the
original impetus for our book; several people spoke about how friends drop away
once the dementia diagnosis is received.
This session was organized by the European Working Group of People with
Dementia, which consists of 11 persons (from 11 countries) and their care
partners. One 55-year old woman in the
group from Czech Republic who has young onset Alzheimer’s spoke at an afternoon plenary session and reminded the audience never to forget the individual
differences among persons with the diagnosis.
Her talk was followed by one from a scientist working for the Innovative
Medicines Initiative (Brussels, Belgium); she described the complex need to
match prevention and treatment methods to individual needs and
circumstances. She also reminded us of
the fact that between 1998 and 2011, 101 drug trials for treating Alzheimer’s
symptoms have failed; the last of the 5 drugs approved by the FDA for
Alzheimer’s treatment was approved in 2003.
A brilliant Maltese psychiatrist now working in Australia
talked about how dementia is not solely a cognitive problem but rather is
accompanied by symptoms that may be more distressing than memory loss and
confusion; these include delusions, hallucinations, depression, anxiety,
irritability, agitation, and apathy.
Although there’s a worldwide effort to dramatically reduce the
prescription of anti-psychotic medications for people with dementia, we have
been slow to optimize treatment and care for people with these
characteristics. Here’s where
psychosocial “interventions” and creative engagement programs can have a huge
impact, though the medical community always wants to see the evidence for their
legitimacy, evidence that cannot always be obtained through the same methods
used to test drugs (e.g., randomized control trials). However, Alzheimer Europe is supporting a
group of scientists doing good research on psychosocial programs; they are
rigorously examining studies to determine which ones show the most
promise. On the one hand, Susan was
pleased to hear him say we need more psychologists and counselors trained to
work with people with dementia and their care partners, but on the other hand,
she gets discouraged when she considers how few training programs exist to do
After a few more addresses on assistive technologies and
designs for homes where people with dementia can thrive, the last two speeches
of the day dealt with the persistence of the self through the course of
dementia, and the creative work going on in the U.K. to promote dementia
friendly initiatives. These range from cupcake
creation programs to a University of Bournemouth program where people with
dementia are doing marine archeology by helping scientists collect, clean, and
identify objects. (Note to academic
friends: Check out the work of Althea
On December 11, 2013, the G8 is meeting in London. The British Prime Minister has declared the
topic of the meeting to be dementia friendly societies. Let’s hope the world cooperates by having no
more outbreaks of war, economic disaster, etc.
Try to imagine Putin and Obama sitting down to talk about how their
countries are affected by the growing number of persons diagnosed with
dementia. Let’s also hope the conversation
doesn’t simply focus on defining this as a burden to economies.
Our next post will address major themes that emerged in the
course of the conference, and how they speak to the work being done by the Fox
Valley Memory Project. But first we badly
need some sleep. Personal note: we had
one of the Twenty Noteworthy Meals of our lives at a nearby Mediterranean
seafood restaurant: we knew we were in good hands when the chef stopped by our
table and told us to ignore the menu and allow him to take care of us with
specially prepared mussels, scallops, and three kinds of grilled fish (along
with grilled veggies). “I have no butter
at all in my kitchen,” he proudly exclaimed.
We look forward to these next few post-conference days in Malta. Fun fact: Malta is the most densely populated
country in Europe!