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EVALUATION OF MINNESOTA

COMMUNITY-BASED SERVICES FOR

PERSONS WITH EARLY MEMORY

LOSS AND THEIR CARE PARNTERS

JOSEPH E. GAUGLER, PH.D.

ASSOCIATE PROFESSOR, MCKNIGHT PRESIDENTIAL FELLOW

SCHOOL OF NURSING

CENTER ON AGING

THE UNIVERSITY OF MINNESOTA

SPECIFIC AIMS

• Provide an overview of the following memory loss

programs in the Twin Cities/Minnesota region:

• The Contemporary Journeys Program (Walker Art Center)

• The Discover Your Study Program (Minneapolis Institute of

Arts)

• The Memory Club (The Alzheimer‟s Association:

Minnesota-North Dakota Regional Office)

– Park Nicollet Senior Services

– Rochester Alzheimer’s Association Chapter Office-Mayo

Clinic

– Wilder Memory Loss Program

EARLY-STAGE SUPPORT

• It is assumed early detection of Alzheimer‟s disease (AD) can

result in various benefits for persons with AD and their family

caregivers.

• Consensus statements and clinical opinion suggest that early

detection and diagnosis of AD provides:

• More time to make advanced care decisions;

• Offers the person with early-stage AD the opportunity to actively

participate in health care decisions;

• Prevents catastrophic events such as driving accidents;

• More effectively prevents dementias that are not caused by AD (e.g.,

vascular dementia); and

• Increases the potential for existing treatments to exert stronger and

longer benefits.

EARLY-STAGE SUPPORT

• There exists little empirical evidence demonstrating the actual

benefits of early diagnosis or detection.

• A related concern linked to the drive for early diagnosis is whether

there exist sufficient services and support (both pharmacologic and

nonpharmacologic) to best meet the needs of persons with early-

stage AD or their family members (called „„care partners”)

• The purpose of this presentation is to summarize the results of

three small program evaluations of non-pharmacological support

services for persons with early-stage AD or memory loss (PWML)

and their care partners

CONTEMPORARY JOURNEYS

• A potentially cost-effective intervention approach that may have multifaceted benefits is art therapy.

• There is extensive anecdotal evidence that a variety of art therapies, such as dance, music, theater, and similar creative expressions may help to improve mood and quality of life of persons with dementia (Basting, 2006; Burton, 2009; Smith, 2010).

• However, there exist few evaluation efforts that support such anecdotal accounts.

• The Walker Art Center (WAC) received funding from the MetLife Foundation in 2009 to deliver and conduct a pilot evaluation of a guided art tour and art “lab” (i.e., group sessions where various art projects are devised and created) program.

• This program, called “Contemporary Journeys (CJ), was specifically designed for PWMLs and their care partners.

CONTEMPORARY JOURNEYS

•The main goal of CJ was to increase enjoyable activity, feelings

of self-efficacy, and psychosocial well-being on the part of

PWMLs and improve emotional distress on the part of care

partners while also offering a learning opportunity.

•The evaluation questions of CJ were as follows:

• Do PWMLs who participate in CJ report increased psychosocial

well-being/quality of life?

• Do PWMLs and care partners who participate in CJ experience

increased frequency and quality of pleasant events and activities?

• Do care partners report decreased stress during participation in CJ?

• Do PWMLs who participate in CJ report increased

efficacy/perceived effectiveness in completing tasks?

CONTEMPORARY JOURNEYS

•The CJ evaluation relied on a single group, pre-test/post-test design.

•Persons with early stage dementia/memory loss and their care partners were eligible to participate.

•The CJ included 6 weekly sessions: 3 art lab sessions that included a variety of interactive activities that the PWML and care partner can engage in to create and enjoy art and 3 gallery tours of the WAC.

•Each session is led by a tour guide.

•To further enhance the experience of CJ participants and reduce the potential for over-stimulation or distress, CJ participants engaged in these activities when the WAC was not open to the public.

CONTEMPORARY JOURNEYS

• A total of 10 dyads (PWML and care partners) participated and were jointly recruited by the WAC and the Alzheimer‟s Association Minnesota-North Dakota regional office.

• A pre-CJ and post-CJ survey was administered to care partners to measure:

• Severity of cognitive impairment of PWMLs (The Family Questionnaire, a family staging dementia tool)

• Care context (sociodemographic background of PWML and care partners)

• Psychosocial well-being of the PWML (Dementia Quality of Life)

• Pleasant activities of the PWML and care partners (Pleasant Events Activities Schedule-Alzheimer‟s Disease)

• Care partner stress (Montgomery Borgatta Stress)

• Satisfaction with CJ

• A pre- and post-CJ survey was also administered to PWMLs to measure:

• Effectiveness dealing with memory loss

• Psychosocial well-being (Dementia Quality of Life, Cantril Quality of Life Ladder); and

• Satisfaction with CJ.

CONTEMPORARY JOURNEYS

• Paired T-tests were conducted to examine statistically

significant change and univariate analyses were utilized to

describe satisfaction data

• Open-ended comments were included in the post-CJ survey

for participants to provide perceptions of strengths and

weaknesses of CJ.

•Group discussions were also held with participants and

Walker staff to collect additional qualitative data on the

processes, challenges, and benefits of the CJ program.

CONTEMPORARY JOURNEYS

• The integrated tour/art lab approach of CJ appeared to have its most significant impact on increasing care partners‟ perceptions of the PWMLs‟ psychosocial well-being and overall quality of life (p < .05). • These empirical findings were confirmed in both written and oral

open-ended comments from care partners that the CJ appeared to provide stimulation and benefit that extended well beyond the walls of WAC.

• In addition, a promising empirical trend emerged suggesting that CJ may motivate increased engagement in enjoyable activities that encompassed more than just art.

• It appears that the integration of tours alongside the individualized creative expression offered in the art labs resulted in a different and more proactive approach to “living with memory loss:” one that involved increased engagement in a wide range of enjoyable activities.

CONTEMPORARY JOURNEYS

•There was a lack of significant or meaningful changes detected in other outcomes.

•These preliminary and positive findings notwithstanding, the pilot evaluation suggests several critical recommendations to strengthen evaluations of programs such as: • The inclusion of comparison groups

• Appropriate sampling that will allow for effective statistical analysis

• Possible adoption of mixed methods designs to better tap appropriate outcomes that art therapy programs can best influence, and

• The integration/triangulation of multiple modes of data collection to better illustrate how arts therapy programs can benefit the PWML and the care partner.

• In this manner, research on arts therapy for persons with dementia will move into the realm of best/evidence-based practice for persons, families, and professionals grappling with the challenges of memory loss.

DISCOVER YOUR STORY

• In 2010, the Minneapolis Institute of Arts (MIA) conducted

an evaluation of a guided tour program called “Discover

Your Story” (DYS) which was designed specifically for

PWMLs and their care partners.

• Among the main objectives of the DYS program are to

alleviate concerns, meet expectations, increase

knowledge, and provide positive benefits from the

standpoint of community care providers (CCPs; paid

employees or volunteers from local senior service

programs who attended DYS tours with PWMLs).

DISCOVER YOUR STORY

• The research questions of the DYS evaluation were:

• What were community care providers‟ concerns prior to and

after the Discover Your Study (DYS) tours?

• What were community care providers‟ expectations prior to

the DYS and were those expectations met following DYS?

• Did community care providers‟ knowledge of tour participants

significantly increase (p < .05) following participation in DYS?

• What were community care providers‟ perceptions of the

benefits, hassles, and surprises that occurred following DYS?

• What were community care providers‟ ratings of satisfaction

with DYS?

DISCOVER YOUR STORY

• The Discover Your Story tours engage individuals in the early and middle stages of Alzheimer‟s, and their family, friends or care partners, in discussions focused on thematically related artworks in the museum‟s galleries.

• Participants are encouraged to discover themselves while reminiscing about, reflecting upon or comparing their own life stories to the stories in works of art.

• A goal of this program is to provide participants with a meaningful experience discussing art and socializing in the welcoming environment of the MIA‟s galleries.

• Tour guides regularly incorporate touchable props to engage multiple senses into the tours, and a creative storytelling activity is integrated into some of the tours.

• Tours are kept to limited numbers, allowing for a more personal, relaxed experience.

• Museum volunteer tour guides (docents)-specially trained by Alzheimer‟s Association and museum staff-facilitate these tours.

• All tour participants leave with a postcard of an artwork they discussed as a memento of their experience and as a prompt for further discussions.

• “Discover Your Story” tours take place when the museum is opened to the general public thus providing truly equal access to everything the museum has to offer.

• All DYS tours are free.

DISCOVER YOUR STORY

• Community care providers from local residential memory loss settings or adult day programs were eligible to participate.

• A total of 25 CCPs participated; 19 completed pre- and post-DYS assessments.

• A pre-DYS and post-DYS assessment (approximately conducted 70 days apart, on average) was administered online to assess:

• CCP background

• Concerns

• Expectations

• Knowledge of tour participants‟ lives

• Benefits

• Surprises

• Hassles of DYS, and

• CCP satisfaction.

• Paired T-tests were conducted to examine statistically significant change and univariate analyses were utilized to describe other outcomes.

• Open-ended comments were included in the post-DYS survey for participants to provide perceptions of CCP expectations, hassles, benefits, surprises, and satisfaction.

• These open-ended items were examined to identify additional key issues that emerged in this DYS evaluation.

DISCOVER YOUR STORY

•A statistically significant decrease in CCP concerns occurred (p = .006).

•The expectations of CCPs were high prior to the DYS, but CCPs also noted that their high expectations of DYS were met or exceeded following participation.

• Community care providers‟ knowledge of tour participants did not significantly change during the course of the DYS evaluation.

•CCPs noted a number of benefits and high satisfaction related to participating in the DYS. • These benefits included stimulation

• superb MIA staff guidance

• Engagement with art

• Interaction with others in new and interesting ways.

• It appeared that the specialized tours resulted in a proactive approach to living with memory loss: one that involved increased engagement, stimulation and sharing of personal stories.

DISCOVER YOUR STORY

•The DYS offered stimulation within a calm and peaceful

environment (the MIA) along with caring tour staff to provide an

experience that carried benefit to participants‟ lives beyond the

tours.

• The DYS offered the opportunity to “normalize” the enjoyment

and contemplation of art for PWMLs by providing an

individualized tour experience within regular gallery hours.

• The findings here also suggest key recommendations to

strengthen the quality of future evaluations, as noted earlier.

THE MEMORY CLUB

• Unlike traditional support groups that only include family members of relatives with middle- to late-stage dementia, the Memory Club aims to involve the care partner and PWML jointly to participate in discussions about the PWML‟s illness and care.

• This approach shares some similarity to traditional marital/family therapy approaches, which revolve around strengthening the couple‟s/parent-child relationship via learning about each other‟s difficulties in face-to-face interactions.

• The Memory Club also recognizes the devastating impact of an AD or related dementia diagnosis on the care partner-PWML relationship and offers separate sessions to strengthen each individual so that they can, in the end, work more effectively as a dyad in facing dementia.

• The Memory Club aims to increase information and knowledge about dementia, improve communication and relationship issues, improve confidence regarding future planning decisions, and enhance feelings of support via increased efforts to reach out to other family members and friends regarding the PWML‟s early-stage dementia.

THE MEMORY CLUB

• Each session of the Memory Club is moderated by 2

facilitators, includes from 10 to 13 weekly sessions lasting 90

to 120 minutes, and involves the following:

A joint interaction period that includes PWMLs and care

partners;

• Separate group sessions for PWMLs and care partners; and

• A „wrapping-up‟‟ session that involves both PWMLs and care

partners jointly.

• Sessions are organized around specific topics related to

early-stage dementia and also include expert speakers.

THE MEMORY CLUB

• The primary goal of this study was to implement The Memory Club

in 3 diverse settings in Minnesota. The single-group pre/post-test

evaluation included care partner and PWML dyads across the 3

sites to address the following research questions:

• Did care partners who participated in the Memory Club report

statistically significant (p < .05) decreases in stress and depressive

symptoms?

• Did care partners who participated in the Memory Club report

statistically significant increases in perceptions of effectiveness when

performing care tasks and preparation?

• Did PWMLs who participated in the Memory Club indicate statistically

significant increases in perceptions of effectiveness when performing

various activities and decreases in depressive symptoms?

THE MEMORY CLUB

• The Memory Club‟s most apparent benefits were in offering

information and education to care partners in preparing for the

future.

• Following diagnosis, many families and persons in the early stages of dementia may feel adrift, as there is a paucity of stage-appropriate services for both care partners and PWMLs who are still able to take part in decision-making and planning.

• One of the major benefits of the Memory Club was its ability to motivate and engage care partners in preparing for the future needs of relatives suffering from early-stage dementia, and that including PWMLs in such deliberations may have helped facilitate this preparation.

• care partners reported greater confidence in dealing with the various mood problems, memory concerns, and daily tasks that many PWMLs may struggle with during the early stages of dementia.

• The potential positive effects of the Memory Club thus appeared to extend beyond preparation to the care and supervision actually performed by families.

THE MEMORY CLUB

• There is a lack of available psychosocial services for persons with early-stage dementia and their care partners.

• The preliminary findings of this evaluation imply that a joint psychosocial approach such as the Memory Club (along with other protocols) can help to fill this gap.

• For such approaches to gain greater traction in clinical practice, evaluations that adhere to high-quality evidence standards (eg, randomized controlled trials) and more refined measurement for PWMLs are required.

• It is critical that providers acknowledge the likely diverse needs and preferences of PWMLs when delivering joint psychosocial support programs.

• With the increasing emphasis on early-stage detection and diagnosis of AD, the potential benefits of programs such as the Memory Club support their use in comprehensive care planning for PWMLs and families who must navigate the onset of dementia.

QUESTIONS?

Joseph E. Gaugler, Ph.D.

Associate Professor, McKnight Presidential Fellow

School of Nursing, Center on Aging

The University of Minnesota

6-153 Weaver-Densford Hall, 1331

308 Harvard Street, S.E.

Minneapolis, MN 55455

Phone: 612-626-2485

Email: gaug0015@umn.edu

Fax: 612-625-7180