EVALUATION OF A MUSEUM EXPERIENCE FOR PEOPLE WITH AD AND THEIR FAMILY MEMBERS

Mary Mittelman, DrPH

Center of Excellence on Brain Aging

NYU Langone Medical Center

Participants and Eligibility

People in the early stage of Alzheimer’s disease

Their family caregivers First time participants in Meet Me

at MoMA.

Assessment Battery

Self rating scales (Modified for person with dementia) Intake and follow-up Instant reaction – Smiley Faces Take home evaluation to be mailed back

Observer rated scales Individual Group

Qualitative assessment Written expansion of quantitative scales Focus groups.

Procedures First Visit/ Intake

Introduction by MoMA staff Consent form Study protocol Lunch Meet Me at MoMA Take home evaluations distributed to be sent back to MoMA

Second Visit (8 days after the first visit)/ Follow-up Call from MoMA staff reconfirming the time and date of visit Complete the follow-up assessment Lunch Special interactive talk/discussion with educator Gifts of appreciation Free passes and invited to stay and visit that day

Third Visit/ Focus group Participants, museum staff and NYU researchers In-depth exploration of reactions to the Meet Me at MoMA.

Male

Female

GENDER OF CAREGIVER

Relationship of

caregiver to person

with dementia

Spouse

Child

Relationship of Caregiver to Person with Dementia

Demographic Characteristicsof Caregivers

Demographic Characteristicsof Caregivers

High school graduate

Some college

College degree

Some graduate school

Graduate school degree

EDUCATION OF CAREGIVER

FT

PT

HM

RET

UNSH

UNLONG

EMPLOYMENT STATUS OF CAREGIVER

Results

fam01 fam02

23

24

25

26

27

Mea

n a

nd

95%

Co

nfi

den

ce In

terv

als

Maximum score = 52, minimum = 13 (higher is better)

Change from Intake to One Week Follow-up

Response of Person with Dementia

Family Relationship Scale

p=.065

Self Esteem before MoMA Visit Self Esteem One Week after MoMA Visit

18

19

20

21

Me

an

an

d 9

5%

Co

nfi

de

nc

e In

terv

al

Maximum=40, minimum=8

Comparison of Intake and 1 Week Follow-up

Self Esteem of Person with Dementia

Intake 1 week follow-up

6

8

10

12

Me

an

an

d 9

5%

Co

nfi

de

nc

e I

nte

rva

l

Comparison of Intake and One Week Follow-up

Number of People to whom Caregiver Felt Close

Caregiver Social Support

Emotional problems: Intake Emotional problems 1 week post visit

1

2

3

4

5

Mea

n a

nd

95

% C

on

fid

en

ce

In

terv

al

Note: 1=not bothered at all, 3=moderately bothered, 5=extremely bothered

Comparison of Intake to 1-Week Follow-up

Question 7: Rand SF-8: Health Related Quality of Life

How Much are You Bothered by Emotional Problems?

p < .05

Pre Smiley Face Post Smiley Face

3.6

3.8

4.0

4.2

4.4

4.6

4.8

5.0

Me

an

an

d 9

5%

Co

nfi

de

nc

e I

nte

rva

l

Five faces from very unhappy coded 1 to very happy coded 5

Comparison of Intake and Immediately after Visit

Reflected by Smiley Faces

Caregiver Mood

p < .0001

Pre Smiley Face Post Smiley Face

3.6

3.8

4.0

4.2

4.4

4.6

Me

an

an

d 9

5%

Co

nfi

de

nc

e I

nte

rva

l

Five faces from very unhappy coded 1 to very happy coded 5

Comparison of Intake and Immediately after Visit

Person with Dementia Mood as Reflected by Smiley Faces

p < .0001

Observations: Individuals

Adaptation of a nursing home form Two observers per participant Categories

Engagement Looking at painting Looking at educator Responding to educator Negative reactions.

Observations: Group

Interactions/responses of pwd were greater with educator than with caregiver

Laughing, joking as signs of group cohesion built through the 3rd picture

Working subgroups cohesive but caregiver led Overall tone of groups was warm Global impressions clear - ENGAGED AND IN A

GOOD MOOD.

Limitations of observations

Difficult to “decode” behavior: looking, staring (at picture, at educator?)

Could not hear conversations Did not have adequate mechanism to

track cross-talk.

Take-home questionnaires

Quantitative and qualitative components: precoded and write-in sections

Modified for person with dementia Remarkable rate of return response.

Caregiver responses to take-home evaluations What attracted you to the program?

(Precoded question)Opportunity for person with memory problems

to take part in an activityAn activity to do with person with memory

problemsOther: trust in person who recommended the

program.

Caregiver responses to take-home evaluations Did you enjoy the experience?

97.5% said yes97.5% also thought their relative enjoyed the

experienceWhat surprised you about the response of the

person with dementia?Degree of engagement of person with dementia

Caregiver responses to take-home evaluations

What was the best thing about the museum visit? Positive experience created by educators and staff

What effects did you observe in your relative? Better mood More responsive to environment More interactive and talkative.

Caregiver take-home evaluation: Overall impression Caregivers valued the opportunity to share

an experience with their relative with dementia that was also enjoyable for them

The educators and the staff make the program the success that it is.

Caregiver take-home evaluation Quotation from caregiver “I can’t begin to express the gratitude I feel for

the Meet Me at MoMA program: … the docents, the privacy and the magnificent art combine to make for an exhilarating experience. Since my husband’s decline, there are fewer opportunities for us to experience normal environments. The MoMA event with its thoughtful design and compassionate staff make it possible for my husband and me to both participate as a “normal” couple, as responsive viewers of great art.”

Take home evaluation for people with dementia What was the best thing about your visit?

The educatorsDiscussing the artwork

Did you observe any change in yourself after the program?Enhanced my self esteem

Focus group discussions

Two focus groups 4-5 couples who had participated in the

study approximately 3 months earlier Focus guide provided structure for

discussion and consistency across groups.

Focus group: Caregiver responses

What did you like about the program?A place to go togetherThe joy for me was watching him (husband

with dementiaEducators and staff are greatThe activity, doing it together.

Focus group: Caregiver responses

What did you get out of the program as a couple? You are completely free in this environment. I don’t

have to be concerned about what my husband will do I like that it makes my wife happy

Would you recommend any changes? More venues for contact

Contact list Tea after the tour. “Its kind of a drastic ending to a

very nice experience and we really don’t get to know each other”

Focus group: Responses of people with dementia

What did you like about the program? It’s a validating experienceNo stigma about having AD I have something to discuss with my family

What did you get out of it as a couple?We talk about it on the way home

Focus group: Final question

Is there anything you want to tell the “boss”?“Just how much we appreciate the program.

The diagnosis of AD changes your life and to know that somebody is interested in making it better really means a lot”

Observations

Participants attended intakes and follow-ups in spite of harsh weather conditions

People in the early stage can respond to appropriate scales with support

We have identified the scales that measured significant effects of the intervention

The desire for more such experiences for the couple was poignantly and repeatedly expressed.

Summary

The information obtained by different approaches to data collection supported and enhanced the conclusions: The experience was validating and pleasurable for the

couple The educators and staff created a nurturing and

stimulating environment central to the MoMA experience

We now have evidence for the efficacy of the MoMA program

Meet Me at MoMA provides a valued and important experience for participants and should be replicated broadly.