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Meet Me The MoMA Alzheimer's Project: Making Art Accessible to People with Dementia

Research and Development

The History of The MoMA Alzheimer's Project

How do programs for people with dementia and their caregivers fit into MoMA's overall educational program?

The Museum of Modern Art is committed to enabling all visitors to experience its unparalleled collection of modern and contemporary art. MoMA recognizes the diversity of the general public's abilities and needs, and offers a variety of programs and services to ensure the accessibility of the Museum and its collection. Through its Access Programs, each year the Museum serves over 10,000 individuals who have physical, learning, emotional, behavioral, or developmental disabilities, or are partially sighted, blind, hard of hearing, or deaf. Due to the staggering number of people affected by Alzheimer's disease, in 2006 MoMA decided to develop programming for this particular audience, and was one of the first museums in the country to do so.

What types of programs does MoMA offer for people with dementia and their caregivers?

MoMA’s offerings for individuals with dementia and their care partners include by-request programs for groups coming from care organizations, such as assisted-living facilities, nursing homes, and adult-care centers. These programs incorporate lively discussions of artworks as well as art-making components, and take place at the Museum and/or off-site at the organization. The Museum also offers Meet Me at MoMA, a monthly interactive gallery-discussion program for individuals with dementia and their family or professional care partners (preregistration required). Specially trained Museum educators facilitate all program offerings.

What is The MoMA Alzheimer's Project?

The MoMA Alzheimer's Project was the national and international expansion of the Museum's education programs for individuals living with Alzheimer's disease and other forms of dementia and their care partners. It was a special initiative in the Museum's Department of Education, which took place from 2007 to 2014. Funded by a major grant from MetLife Foundation, The MoMA Alzheimer's Project broadened the reach of MoMA's programming through the development of resources that can be used by museums, assisted-living facilities, and other community organizations serving people with dementia and their care partners.

What resources are available through The MoMA Alzheimer's Project?

Publication

The 2009 publication Meet Me: Making Art Accessible to People with Dementia provides a comprehensive framework for creating art programs for individuals with dementia and their care partners. The publication is made up of guides outlining processes for creating educational experiences with art in an arts institution, a care-facility setting, and in the home, and is intended as a resource for museum and care-organization professionals, as well as for professional and family care partners. An accompanying booklet contains thematic art modules using works from MoMA's collection, with additional reproductions, and a DVD of images that allow users to easily view and discuss these artworks. The entirety of the publication is available on this website, free of charge.

Website

This Web-based resource expands the reach of our print publication by making its contents available online. The site also includes video from special initiatives that have taken place in conjunction with the Museum's art and dementia programs, as well as a series of instructional training videos on how to plan and implement art discussion and art-making programs for this audience.

Executive Report for the NYU Study

MoMA and the New York University Center of Excellence for Brain Aging and Dementia completed a groundbreaking evaluative study of Meet Me at MoMA, the Museum’s gallery discussion program for individuals with dementia and their care partners, in 2008. Results, including several statistically significant findings that show improved mood for both people with Alzheimer's disease and care partners, indicate that there can be many benefits associated with programs for people with Alzheimer's disease. To read the executive report, see the NYU Evaluation of Meet Me at MoMA.

Executive Report for the Audience Focus, Inc., Study

In 2011 The MoMA Alzheimer's Project commissioned Audience Focus, Inc., to conduct an investigation of the museum programs that have developed for people with Alzheimer's disease and other forms of dementia and their care partners. Evaluators surveyed the different types of programs that have emerged with the help of The MoMA Alzheimer's Project, and to what degree this programming has affected the educational philosophies and community relationships of participating museums. To read the executive report, see the Evaluation by Audience Focus, Inc.

Conference Presentations, Trainings, and Workshops

From 2007 to 2014, staff of The MoMA Alzheimer’s Project reached over 10,500 colleagues through conference presentations and training workshops. Outreach has involved presentations at numerous conferences in the fields of arts, museums, aging, and Alzheimer’s disease. MoMA has also led workshops for the staff, educators, and docents of various museums, and additional online seminars for those interested in developing arts-related programs.


Meet Me: Making Art Accessible for People with Dementia is available for download

Full publication

Download PDF

Table of Contents

Foreword and Introduction

DEMENTIA: Background on Alzheimer's Disease

EXPERIENCE: Meet Me at MoMA

PERSPECTIVES: Conversations and Testimonials

RESEARCH: NYU Center of Excellence for Brain Aging and Dementia

PRACTICE: Guides for Creating Art Programs

Selected Biographies, Acknowledgements, List of Artworks, and Board of Trustees of The Museum of Modern Art

Art Modules

Introduction, Table of Contents, Components of the Kit, Components of a Module

Art Modules One through Eight

List of Artworks

Additional downloads

Individual modules (English | Spanish) and guides (English | Spanish) for creating programs are also available for download.


About Dementia

Dementia is a general term for a group of brain disorders, of which Alzheimer's disease is the most common. Alzheimer's disease accounts for 50 to 70 percent of all dementia cases. Other types include vascular dementia, mixed dementia, dementia with Lewy bodies, and frontotemporal dementia. All types of dementia involve mental decline that:

  • impairs normal functioning (for example, the person didn't always have a poor memory);
  • is severe enough to interfere with usual activities and daily life;
  • and affects more than one of the following core mental abilities:
  1. recent memory (the ability to learn and recall new information)
  2. language (the ability to write or speak, or to understand written or spoken words)
  3. visuospatial function (the ability to understand and use symbols, maps, etc., and the brain's ability to translate visual signs into a correct impression of where objects are in space)
  4. executive function (the ability to plan, reason, solve problems, and focus on a task).

About Alzheimer's Disease

Alzheimer's disease is named for the German physician Alois Alzheimer, who first described the disorder in 1906. Scientists have learned a great deal about this condition in the century since Dr. Alzheimer first drew attention to it. Today we know that Alzheimer's disease:

  1. is a progressive and fatal brain disease. It destroys brain cells, interfering with memory, thinking, and behavior severely enough to affect a person's work, hobbies, and social life. Alzheimer's disease gets worse over time and is fatal.
  2. currently has no cure. But treatments for symptoms, combined with the right services and support, can make life better for the millions of Americans who live with Alzheimer's disease. We've learned most of what is known about Alzheimer's disease in the last fifteen years, and an accelerating worldwide effort is under way to find better methods of treating the disease, delaying its onset, and preventing it from developing.

Today more than five million people in the United States are living with Alzheimer's disease. That number has doubled since 1980 and is expected to be as high as sixteen million by 2050. The direct and indirect costs of Alzheimer's disease and other dementias amount to more than $148 billion annually. According to a 2004 report that analyzed Medicare claims data, beneficiaries with dementia cost Medicare three times more than other older beneficiaries. Based on current estimates, these costs will double every ten years.

Changes in the Brain

Just like the rest of our bodies, our brains change as we age. Most of us notice some slowed thinking and occasional problems remembering certain things. But serious memory loss, confusion, and other major changes in the way our minds work are not a normal part of aging. These symptoms may be a sign that brain cells are failing.

The brain has a hundred billion nerve cells, or neurons. Each nerve cell communicates with many others to form networks. Nerve-cell networks have special jobs: some are involved in thinking, learning, and remembering; others help us see, hear, and smell; and others tell our muscles when to move.

To do their work, brain cells operate like tiny factories, taking in supplies, generating energy, constructing equipment, and getting rid of waste. Cells also process and store information. Keeping everything running requires coordination and large amounts of fuel and oxygen. In a brain affected with Alzheimer's disease,parts of the cells' factories stop running well. It is not known exactly where the trouble starts, but, as in a real factory, backups and breakdowns in one system cause problems in other areas. As damage spreads, cells lose their ability to do their jobs correctly. Eventually they die.

Plaques and Tangles

Plaques and tangles — abnormal structures that can develop in the brain — are prime suspects in the damage and death of nerve cells. These were among the abnormalities that Dr. Alzheimer noticed in his patients, although he had different names for them.

Plaques build up between nerve cells. They contain deposits of beta-amyloid, a protein fragment. Tangles, which form inside dying cells, are twisted fibers of tau, another protein.

Although most people develop some plaques and tangles as they age, those with Alzheimer's disease tend to develop far more. These plaques and tangles tend to form in a predictable pattern, beginning in areas important for learning and memory and then spreading to other regions.

Scientists researching Alzheimer's disease are not absolutely sure what role plaques and tangles play. Most believe that they somehow block communication among nerve cells and disrupt the activities that the cells need to survive.

Stages

Staging systems provide useful frames of reference for understanding how the disease may unfold. It is important to note, though, that not everyone will experience the same symptoms or progress at the same rate. On average, people with Alzheimer's disease die four to six years after diagnosis, but the duration of the disease can vary from three to twenty years.

Patients are first diagnosed with problems related to memory, thinking, and concentration. Individuals in the early stage typically need minimal assistance with simple daily routines. (At the time of first diagnosis, an individual may have progressed beyond this stage; "early stage" refers to the extent of the disease's progress.)

The term "early onset" or "young onset" indicates Alzheimer's disease in a person under the age of sixty-five. Early-onset individuals may be employed or have children still living at home. Among the issues affected families must face are ensuring financial security, obtaining benefits, and helping children cope with the disease. People who have early-onset dementia may be in any stage of the condition — early, middle, or late. It is estimated that some five hundred thousand people in their thirties, forties, and fifties have Alzheimer's disease or a related dementia.

Common Effects of Alzheimer's Disease

Some change in memory is normal as we grow older, but the effects of Alzheimer's disease are more severe than simple lapses. They include difficulties with communicating, learning, thinking, and reasoning — impairments severe enough to have an impact on an individual's work, social activities, and family life in the early and middle stages. Some of the most common effects that people with dementia and Alzheimer's disease experience are:

  1. memory loss. Forgetting recently learned information is one of the most common early signs of dementia. Some people may begin to forget more and more often or be unable to recall information at a later time.
  2. difficulty performing familiar tasks. Some may find it hard to plan or complete everyday tasks. They may lose track of the steps involved in preparing a meal, placing a telephone call, or playing a game.
  3. problems with language. They may forget simple words or make unusual substitutions, making their speech or writing hard to understand. They may be unable to find their toothbrush, for example, and ask for "that thing for my mouth."
  4. disorientation. Some may become lost in their own neighborhood, forget where they are and how they got there, and not know how to return home.
  5. poor or decreased judgment. They may dress inappropriately, for example, wearing several layers on a warm day or little clothing on a cold one; they may be easily deceived.
  6. problems with abstract thinking. Some people may have unusual difficulty performing complex mental tasks, such as remembering what numbers are for and how they should be used.
  7. misplaced things. Some people may put things in unusual places: an iron left in the freezer or a wristwatch in the sugar bowl.
  8. changes in mood or behavior. Rapid mood swings — from calm to tears to anger — for no apparent reason are common.
  9. changes in personality. The personalities of people with dementia can change dramatically. They may become extremely confused, suspicious, fearful, or dependent on a family member.
  10. loss of initiative. Some people may become very passive, sitting in front of the television for hours, sleeping more than usual, or not wanting to take part in their usual activities.
  11. This information has been adapted with permission from the Alzheimer's Association Web site. For more information, please consult www.alz.org.


New York University Evaluation of Meet Me at MoMA

The evaluation and results are available for download in PDF format (Adobe Acrobat Reader required).

The Evaluation

This report describes the findings of a study designed to evaluate the efficacy of the Meet Me at MoMA program for people in the early stage of dementia and their family caregivers. This groundbreaking study provides the first formal evaluation that demonstrates, with both quantitative and qualitative evidence, the many benefits of making art accessible to people with Alzheimer's disease and their caregivers. It also points out the elements of the program that have the greatest positive impact and those components that might be modified to further enhance its effects. This evaluation provides valuable information about the feasibility of assessing people in the early stage of dementia and suggests new directions for future programs and studies.

Summary

Conclusions

The fact that attendees of the Meet Me at MoMA program return month after month speaks eloquently to the meaning and value it holds for participants. Coming to MoMA again, a place many had visited in the past but were reluctant to return to, was a welcome confirmation that not all valued parts of life have to be forfeited to Alzheimer's disease. This research has helped to identify the specific aspects of the MoMA program that individually and together coalesce to create its impact.

  • The Importance of the Educator: Beyond a doubt, it is the style and approach of the educators—which is never overly didactic or condescending, but rather warm and interactive—and the interaction with them that participants single out as being of exceptional importance to them. The way in which they involve the participants with dementia and elicit their comments, which are then met with genuine interest and appreciation, rekindles feelings of self-worth.
  • Intellectual Stimulation: Having the opportunity to learn, to be intellectually stimulated, to experience great art together was felt to be a "blessing."
  • Shared Experiences: The family members expressed profound gratitude that the person they care about could have such an experience and, just as important, that they could share it together. For married couples, the opportunity to participate in an activity that is of interest to both partners validated their identity as a couple. Sons and daughters also expressed their pleasure in taking part in an activity with their parents in which both could be relaxed and engaged.
  • Social Interaction: For so many couples in which one has dementia, what were once "normal" social interactions become events fraught with strain and shame. While they did remark that the program was inherently a socializing activity, many participants expressed the wish that the program could be extended to include more social interaction after the gallery tour.
  • Accepting Environment: The educators, together with the entire MoMA staff, create a sense of safety and convey feelings of regard for the participants. The value placed on the person with dementia at least temporarily removes the stigma of Alzheimer's disease so that participants can enjoy the MoMA experience. It is possible that the extraordinary attention that was lavished on study participants may have heightened their feelings of being welcome and important, but this also serves to point out how much people with dementia feel the loss of status in the community and how much they appreciate efforts made on their behalf. The wish to continue to attend as a couple, where the limitations of the ill spouse would not affect the experience for the well, makes this kind of program particularly valuable.
  • Emotional Carryover: For both the persons with dementia and their caregivers there were positive changes to mood both directly after the program and in the days following the Museum visit. Caregivers reported fewer emotional problems, and all but one person with dementia reported elevated mood.
  • Program Extension: Almost all caregivers planned to return to the Museum for future programs, which is a testament to their positive experiences. The Meet Me at MoMA program also serves as a catalyst for new conversation in the days to follow.
The study design, which included a variety of measures to gather both qualitative and quantitative data through self-report and observation has yielded a comprehensive understanding of how and why the Meet Me at MoMA program impacts attendees and provides suggestions for modifications and future expansion.

Going Forward

Study participants were very grateful for the Meet Me at MoMA program. As they began to know each other from repeated visits, the desire for more socializing became clear. The setting itself sends the message to the person with dementia that he or she continues to be a person of value, and those participants for whom it was a familiar place can now return with their self-esteem safe and even nurtured.

There were several statistically significant findings from this study, which is gratifying, considering the small sample of participants. They are suggestive of the potential of the Meet Me at MoMA program to improve the lives of people with dementia and their caregivers. A longer-term study with a larger number of participants to corroborate and expand the findings of this first study is recommended. This would provide additional evidence for programming that is geared to bring enjoyment and stimulation to people with dementia and their family members and could have major ramifications for the development of interventions for people with Alzheimer's disease and their caregivers.


Evaluation by Audience Focus, Inc.

Below is the summary of an evaluation conducted by Audience Focus, Inc. in spring 2011. The full report is available for download in PDF format (Adobe Acrobat Reader required).

The Evaluation

In 2011 The MoMA Alzheimer's Project commissioned Audience Focus, Inc. to conduct an investigation of museum programs developed for people with Alzheimer's disease and dementia (AD/D) and their caregivers. The following questions guided the evaluation study:

  • What are the varieties of programs that have emerged with the help of The MoMA Alzheimer's Project? How did these varieties of implementation evolve and why?
  • To what degree does this programming affect the museums and their relationship to their community?
    • Shifts in internal practice and perception
    • Shifts in perception of museum and community
Educators directly responsible for implementation of the program were invited to participate, as well as other educators, volunteers, and/or people from partnering organizations. Responses show that 66 people from 33 museums participated in the survey.

Summary

What are the varieties of programs that have emerged with the help of The MoMA Alzheimer's Project? How did these varieties of implementation evolve and why?

  • Program Phase: Most museums in the study are either in the pilot testing phase of their AD/D program or have implemented it fully for two years or less.
  • Audience Served: While these programs serve all of the stages of Alzheimer's disease, most programs serve people with very mild to mild cognitive impairment. Organizations that work closely with senior care facilities tend to work with people in later stages of the disease. Although the focus of these programs is on people with Alzheimer's disease or dementia, most organizations perceive caregivers as equal participants in the program.
  • Program Location: The majority of AD/D programs take place in museum galleries and include looking at and talking about art. Many programs, however, also have a classroom component: usually an art-making activity, but music, ballroom dancing, poetry, and other hands-on experiences may also be included.
  • Partnerships: Almost all the museums partner in some way with their local Alzheimer's Association and many of them collaborate with local senior care facilities. Some sites are part of a multi-museum collaboration.
  • Funding: Funding for these programs is quite varied. Many programs have no special funding as expenses are paid out of a departmental budget, most commonly the education department. Several programs have special dedicated grant or donor funding just for the AD/D programs while other museums include this program with general programs or special access program initiatives for funding sources.
  • Use of MoMA Resources: The print, website, and staff resources that MoMA offers museum practitioners in the planning and implementation of AD/D programs are greatly used. Those running the programs say that MoMA resources influence their decisions about how to facilitate the group discussions, how to communicate with their audiences, and what teaching methodologies to use in the programs.
  • Publicity and Press: Most museums publicize their programs through museum-related vehicles such as the museum newsletter or magazine. In addition, many programs have received press attention from local or regional news, radio, and television stations.
  • Future Plans: In the future, most organizations want to attract more people to the programs, offer more programs, increase training for staff and volunteers, and secure funding to accomplish these tasks. A few sites want to add an art-making component, conduct programs offsite, change some logistical aspect, such as program timing, schedule, or where visitors enter, and increase accessibility through hearing devices, wheel chairs, and the like.

To what degree does this programming affect museums and their relationship to their community?

    Shifts in Internal Practice and Perception
    • Cross-departmental Collaboration: For all but one museum, this program, by necessity, involved other departments in the museum, particularly security and visitor services departments. However, many museums involved a wide variety, if not all, of their departments. This program has stimulated cross-departmental awareness of, sensitivity towards, and conversations about aging issues. Several participating museums provided training to all staff members on how to best serve this audience.
    • Pedagogical Approach: Many museum practitioners have taken the pedagogical approach employed for their AD/D audience and applied it, in whole or in part, to other areas of their educational practice, including programs for adult audiences and school groups. In addition, many practitioners have found that the approach to this audience has caused them to think differently about the museum experience in general. In many cases, the AD/D programming initiative has spurred practitioners to seek training geared to other special needs audiences, thereby positioning the museum to be increasingly more accessible to all people.
    Shifts in Perception of Museum and Community
    • Related Programming: Implementing an AD/D program has spawned a number of related programs or initiatives. For instance, some museums and their communities engage in public discussions around creativity and aging issues, and sponsor age-related issue workshops for the community.
    • New Community Partners and Opportunities: Implementing an AD/D program has also resulted in new partnerships in the community, and many sites offer the museum as a meeting place for age-related organizations and advocacy groups. In addition, several practitioners note that the museum is continually approached by others working in the senior community to become involved in this program and museum staff members are frequently invited to participate in panel discussions and conferences because of this program.

Reflections

Throughout this study, the evaluators were struck by the passion with which practitioners talked or wrote about their AD/D programs. Implementing this type of program appears to stimulate museum professionals to reflect sensitively and deeply on their practice, which, in turn, has influenced many of them to think differently about the overall museum experience for all types of audiences. In evaluations of other types of museum programs for families, teachers, students, and general adult audiences, we rarely, if ever, hear practitioners talk about the importance of humor, respect, and patience in the implementation of a public program. These are qualities that not only make for meaningful experiences for museum visitors, but bring deeper meaning to the individuals who implement these programs as well. Additionally, there is evidence that these programs cause a wide range of museum staff members to be more aware of the needs and capabilities of the AD/D audience, even if they are not directly involved in the program.

The conversational, organic approach to experiencing art that the AD/D programs use was a natural outgrowth of the pedagogical strategy of inquiry that many museums already employed. That this more conversational approach has been applied to other museum audiences such as school students and to the regular adult visitor is particularly gratifying. It represents not only a growing acceptance but also an embrace of the needs and motivations of all museum audiences.




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