CONNECTIONS:

CONNECTIONS :
Engagement in Life for Persons Diagnosed
with Dementia

Ellen Phipps, CTRS

Alzheimer’s Association Central and Western Virginia Chapter
Barbara Braddock, PhD
University of Virginia

1
 CONNECTIONS: VISION

Families experiencing a diagnosis

of dementia will find satisfaction
and meaning in their daily lives.

2
 The Beginning

 What on earth can we do all day?

 Incidence of dementia increasing
 Good Activities resources but….

3
 Lessons Learned from Home Visitation

Practical
solutions for Caregivers
engagement needed support
were missing

Adult Day
Persons with a
programs, while
diagnosis
an excellent
needed to be
option, are not
engaged in life LESSONS
LEARNED for everyone
FROM HOME
VISITATIONS

4
 Successful Evidenced-Based Programs

2. Montessori-
1. Therapeutic
Based Dementia
Recreation
Programming

3. Cognitive
Intervention

5
1. Therapeutic Recreation

The primary purposes of recreation services are to

provide recreation resources and opportunities in
order to improve health, well being, and
independence.

6
2. Montessori-based Programming for Persons
with Dementia

 Based on the process developed for disadvantaged

children by Maria Montessori
 Designs a prepared environment
 Breaks activities down into steps
 Esthetically pleasing objects

7
3. Cognitive Intervention

Objects are placed in the

environment to facilitate
orientation and memory, as
well as to encourage
engagement in activities.

8
 Phipps Braddock

COGNITIVE
INTERVENTION
MONTESSORI

9
 The Question

How would it be possible to provide the

training and tools necessary to support
and empower caregivers and offer
strength-based meaningful activities at
home?

10
 DEFINITIONS

 Activity
 Meaningful Activity
 Strength-based

11
 CONNECTIONS

WHAT MAKES AN ACTIVITIY

MEANINGFUL?

12
 Meaningful Activity

 Activities are meaningful when they reflect a person’s:

 Interests
 Lifestyle
 Education
 Current level of function

…and are enjoyable to the person!

13
 STAGES OF THE DISEASE –
STRENGTH-BASED PROGRAMMING

7STAGES OF AD divided into 3 categories:

Early Middle Late

Stage Stage Stage

14
 SYMPTOMS AND STRENGTHS CHART
EARLY STAGE

COMMON SYMPTOMS COMMON STRENGTHS

• Problems coming up with right
words
• Trouble remembering names
• Trouble with performing tasks
• Forgetting material one has just
read
• Trouble planning and
organizing
• Forget recent events
• Mood changes
• Able to express oneself verbally
• Able to converse intellectually
• Understands spoken language
• Able to engage in work
• Able to self advocate
• Able to write
• Able to use memory strategies
• Long term memory in tact
• Able to continue use of
technology
• Sense of smell may be in tact

15
 SYMPTOMS AND STRENGTHS CHART
MIDDLE STAGE
COMMON SYMPTOMS
• Problems recalling current
address, telephone number
• Confusion with date, time
• Difficulty choosing
appropriate clothing
• Loss of recent experiences
and surroundings
• Changes in sleep patterns
• Wandering or becoming lost
16
COMMON STRENGTHS
• Ability to express some
thoughts, feelings or ideas
• Able to engage in conversation
• Visual awareness
• May be able to write
• May be able to read some words
• Able to enjoy some physical
activity
• Able to recall some past
memories
• Able to engage in modified work
• Able to recall familiar songs
• Able to gain pleasure from
activity
 SYMPTOMS AND STRENGTHS CHART
LATE STAGE

COMMON SYMPTOMS COMMON STRENGTHS

• Trouble with bowl and bladder • May be aware of the presence of

control
• Significant personality and
behavior changes
• Decreased ability to respond to
environment
• Need total assistance for ADLs
others
• May respond to touch
• Able to hear
• May be communicating through
facial expressions
• Able to gain pleasure from
activity

17
 Bringing it all together: Connections
connecting people with
dementia to meaningful
activity

connecting communities
stimulating brain cells for
for intergenerational
neurological connections
experiences

connecting volunteers
connecting principles of
with persons with
3 practice fields
dementia

18
 Bringing it all together: Connections

Empowering to Person and

caregivers and relationship-
persons centered
experiencing
memory loss

Supportive to
caregivers and Home and
persons community-
experiencing based
memory loss

Volunteer and
community
Strength-based
partnership
driven

19
 AIMS OF CONNECTIONS:
Provide the necessary training, tools, and support to enable
caregivers to structure strength-based meaningful programs at
home for persons experiencing a diagnosis of dementia

Optimize the home environment for success

Facilitate intergenerational relationships

Reduce caregiver stress through enhanced interaction

Educate volunteers to the unique needs of families dealing with a

diagnosis of dementia

20
 CONNECTIONS
Unique strategies:
 Home Visitation / Partnered Volunteers
• Make the Connection
• Assess – (LIS; LQ)
• Summarize
• Design – focus on three
• Guidance / support to family
• Implement – Color coding / intervention
strategies
• Evaluate / Assess

21
 MAKING THE CONNECTION

DESIGN
PROGRAM
SUMMARIZE

OBSERVE

ASK

22
 STEPS TO CONNECTING

ASK OBSERVE: SUMMARIZE

• What are the person’s
interests, and lifestyle?
• What are the person’s
CURRENT abilities?
• What is enjoyable to the
person?
• Cognitive Ability Checklist •Focus on strengths
(CAC)
• Leisure Interest Survey (LIS)
• Life Story Conversation
Starters (LSCS)

23
 TOOLS

Life Story
Leisure Interest Being in the
Conversation
Survey (LIS) moment
Starters (LSCS)

Cognitive
Information Sample Activity
Checklist –
Summary Charts
Color-Coded

24
 DESIGNING THE PROGRAM

 Select 2 – 3 Activities from the “I” Column of the

Leisure Interest Survey (a comprehensive
checklist of activities)
 Determine the Color from the cognitive checklist
(looks at cognition, language, orientation &
memory, attention span)
 Create Activity Stations – our use mobile Activity
Tool Kits

25
 Be Flexible

 Being “in the moment” for persons in later stage

 If the chosen activity does not work, try another

26
 ACTIVITY CENTERS
Example: RED ACTIVITY CENTER
Care for the animals

RED ACTIVITY CENTER

Wash hands and wipe off the
bathroom counter with spray and cloth

27
 CONNECTIONS
BLUE ACTIVITY CENTER
Make a tuna sandwich for lunch

GREEN ACTIVITY CENTER

Indoor herb garden –
smell and touch

28
3. Cognitive Intervention
The environment is held
constant by developing
consistency in

•caregivers and volunteers;

•routines and schedules;
•location of activity centers; and
•materials.

29
CONNECTIONS

Preliminary data shows: Future work:

• 11 of 12 participants successfully
engaged in selected activities
• Caregivers reported increased
confidence in structuring activities in
the home
• Data analysis
• Training / In-services
• Training Manual
• Funding Opportunities
• Faith Communities

Evaluate at each step | Adapt as needed

30
Acknowledgments
 Student visitations funded through the UVA Office of the
Vice Provost of Academic Affairs
 ADRAF GRANT funding from Virginia Center on Aging for
additional research
 Project supported by Sue Friedman, President & CEO of
Alzheimer’s Association, Central and Western Virgnia
Chapter; and Randall Robey, Program Chair
Communication Disorders, University of Virginia
 Participants and their family members

31
References
 Bayles, K.A. & Tomoeda, C.K. (1997). Improving function in dementia and other cognitive-
linguistic disorders. Austin, TX: Pro-Ed.
 Bourgeois, M.S. (1990). Enhancing conversation skills in patients with Alzheimer’s disease
using a prosthetic memory aid. Journal of Applied Behavior Analysis, 23, 31-64.
 Bourgeois, M.S. (1991). Communication treatment for adults with dementia. Journal of
Speech and Hearing Research, 34, 831-844.
 Bourgeois, M.S., (1992). Evaluating memory wallets in conversations with persons with
dementia. Journal of Speech and Hearing Research, 35, 1344-1357.
 Bourgeois, M.S., Camp, C., Rose, M., White, B., Malone, M., Carr, J., & Rovine, M. (2003).
A comparison of training strategies to enhance use of external aids by persons with
dementia. Journal of Communication Disorders, 36, 361-378.
 Camp, C., Judge, K., Bye, C. Fox, K., Bowden, J., Bell, M., et al. (1997). An
intergenerational program for persons with dementia using Montessori methods.
Gerontologist, 37, 5, 688-692.
 Helstrom, I., Nolan, M., & Lundh, U. (2004). ‘We do things together’: A case study of
couplehood in dementia. Dementia: The International Journal of Social Research and
Practice, 4(1), 7–22.

32
References
 Judge, K.S., Camp, C.J., & Orsulic-Jeras, S. (2000). Use of Montessori-based activities for
clients with dementia in adult day care: Effects on engagement. American Journal of
Alzheimer’s Disease, 15, 1, 42-46.
 Keady, J., & Nolan, M. (2003). The dynamics of dementia: Working together, working
separately, or working alone. In M. Nolan, U. Lundh, G. Grant, & J. Keady (Eds.), Partnerships
in family care: Understanding the care giving career (pp. 15–32). Maidenhead: Open
University Press.
 Kessels, R.P.C., & De Haan, E.H.F. (2003). The effects of errorless and errorful learning on
age-related memory loss. Journal of the International Neuropsychological Society, 9, 577.
 Mahendra, N., Hopper, T., Bayles, K., Azuma, T., Clearly, S., & Kim, E. (2006). Evidence-
based practice recommendations for working with individuals with dementia: Montessori-
based interventions. Journal of Medical Speech-Language Pathology, 14, 1, 15-25.
 Phipps, E., & Braddock, B.A. (2008, unpublished). Dementia intervention care: A training
program.
 Wilson, B.A., Baddeley, A., Evans. J.J., & Shiel, A. (1994). Errorless learning in the
rehabilitation of memory impaired people. Neuropsychological Rehabilitation, 4, 307-326.
 Vernooij-Dassen, M., & Moniz-Cooke, E.D. (2005). Editorial. Dementia: The International
Journal of Social Research and Practice, 4(2), 163–169.

33
CONTACT
Ellen Phipps, CTRS
Vice President Programs & Services
Alzheimer's Association Central & Western Virginia

The Jordon Building

1160 Pepsi Place
Charlottesville, VA 22901

Phone: 434-973-6122 Fax: 434-973-4224

ellen.phipps@alz.org
www.alz.org/cwva

34