Preface

As the incidence of dementia increases, with Alzheimers disease being

the most prevalent form, and with no current medical cure, the need for
quality, person-centered care approaches also increases. One such ap-
proach is through activities. All of us engage in activities throughout the
daywe eat, make coffee, read, go to the movies, get dressed, exercise,
and work. The activities we engage in are purposeful, often enjoyable,
and help define who we are. People experiencing cognitive impairment
have the same need to engage in activity; however, they need assistance
in setting up and structuring the activity. Research has supported the
importance of meaningful activity for persons with dementia in helping
to reduce agitation, frustration, and boredom and to support feelings
of accomplishment and enjoyment for improved quality of life. Those
who care for people with dementia need strategies to help them interact
positively with the individual and maintain engagement in life.
We first developed the Connections Activity Program as a train-
ing manual for families, students, volunteers, home care providers, and
healthcare professionals working in long-term care or adult day cen-
ters. It serves as a tool to guide the process of setting up meaningful
activities at home (wherever home may be). The Connections approach
is an evidence-informed activity intervention for persons with cogni-
tive impairment and is designed to promote communicative behaviors
and engagement in life. The earlier training manual was developed out
of a partnership with the University of Virginia as part of a home-visit
community program. Student nurses were assigned to families in the
community who were living with a loved one who was experiencing
Alzheimers disease or related dementia. Time and again, the families
reported the same problem to the students: What on earth can we do at
home all day? Families were at a loss about how to engage their family
member in anything. Even those who were fortunate to have paid home
care providers often found their loved one and the care provider spend-
ing hours in front of the television.
As programming ideas were formulating, Dr. Barbara Braddock
arrived on the scene, and in 2008 she and I developed a memory in-
tervention activity group through the University of Virginias Speech-
Language-Hearing Clinic as a model of community group programming
for persons experiencing cognitive impairment. The group offered stim-
ulating conversation and engaging activities to people with Alzheimers
disease in a small group setting. Based on the success of the program, in

xvii
xviii Preface

2009 we received an Academic Community Engagement (ACE) award

from the university.
That same year, we received an urban-focused grant funded by the
Alzheimers and Related Diseases Research Award Fund (ARDRAF)
within the Virginia Center on Aging (VCOA) to examine a student-
delivered home-based activity program. The results of the ARDRAF
grant were published in the Journal of Recreation Therapy (Braddock
& Phipps, 2010). Subsequently, the Virginia Department of Aging was
awarded federal funding through the Administration on Aging (AoA)
to research the efficacy and impact of the Connections intervention in
helping rural families supporting a loved one living at home with a diag-
nosis (formal or informal) of Alzheimers disease or related dementia.
The project evaluated the effectiveness in terms of reducing caregiv-
er burden and improving the emotional well-being of the person with
memory loss. Home visitors assisted caregivers in setting up meaningful
activities based on the participants current level of function and past
interests.
The AoA project served a total of 160 rural families with the follow-
ing outcomes:
52% of individuals with cognitive decline demonstrated in-
creased engagement in targeted meaningful activities
60% of caregivers reported reduced levels of stress
65% of caregivers reported a better understanding of their fam-
ily members interests and hobbies
68% of caregivers reported increased confidence in accessing
community resources
58% of caregivers reported increased confidence in receiving
additional support from family and friends
A good example of someone who benefited from the program is Arnold,
a 78-year-old man experiencing middle-stage Alzheimers who had spent
most of his days in a recliner asleep in front of the television. His daugh-
ter was at a loss, having tried several activities to engage Arnold, but
to no avail. He had been an expert engineer. She had given him a set of
Legos, assuming he might enjoy the challenge of building. But Arnold
showed no interest. Because of the progression of the cognitive decline,
his daughter had assumed he would no longer be able to engage in ac-
tivities that had previously defined him as a sharp and capable engineer.
Using the Connections approach, the volunteers first took the time to
learn about Arnolds past interests and hobbies. Besides his career as
an engineer, he enjoyed music, especially from the big band era. They
used what they had learned to assemble an authentic tool set as well
Preface xix

as step-by-step prompts to encourage him to use the tools. Then they

watched as he came to life! Arnolds focus and concentration kept him
busy for an hour as he manipulated the screws and screwdrivers with
purpose. For easy access, the tool box was kept next to Arnolds lounge
chair. The volunteers also set up a way for Arnold to enjoy music by giv-
ing him a Walkman to listen to big band musicians. Using headphones
helped to avoid distractions from other sounds in the house. Finally, the
volunteers discovered Arnolds joy in reminiscing through photographs.
His days turned from sleeping for hours to active engagement in mean-
ingful and enjoyable activity.
The Connections Activity Program uses a unique approach to ad-
dress the challenge of matching a persons level of cognitive function
as well as strengths and abilities with activities based on current and
past interests that will sustain meaningful engagement in life. It is our
hope that this guide will benefit readers in providing structure and sup-
port for discovering the many opportunities for meaningful engagement
available to people experiencing cognitive impairment.
Introduction

Activity is the interaction between an individual and the environment.

National Alzheimers Associations Activity-Based Alzheimer Care:

Building a Therapeutic Program (2007)

W
e all interact with the environment through our daily activities
working, reading, talking, running, shopping, making coffee,
doing laundry, preparing meals, or taking a shower. These
activities have meaning for us. They either provide opportunities for
enjoyment and creative expression or serve a specific purpose. We all
have a basic need to feel productive and engaged. The same is true
for those with cognitive impairment, although they may need help in
organizing and structuring activities. The activities that people with
dementia are encouraged to pursue should continue to have meaning to
them and not just provide busy work.
The Connections Activity Program helps anyone, from family and
friends to professional care providers, to engage people with cognitive
impairment in meaningful activities. For consistency, the term cognitive
impairment is used throughout this guidebook to refer to individuals
living with Alzheimers disease or other dementias, officially diagnosed
or not. The Connections program is an evidence-informed activity inter-
vention for people with cognitive impairment. Field-testing has shown
that using the approach can promote higher levels of communicative

1
 2 The Connections Activity Program for People with Dementia

behaviors and engagement in life. Originally compiled for research

practice and treatment fidelity, this guidebook provides step-by-step
instructions for engaging people with cognitive impairment in meaning-
ful activities.

The Connections Approach

What makes the Connections approach unique? Developed collabora-
tively by professionals with expertise in therapeutic recreation, ger-
ontology, developmental psychology, and speech-language pathology,
the approachs core principles are based on theoretical underpinnings
from three practice fields:
therapeutic recreation
Montessori-Based Dementia Programming (Camp, 1999;
Judge, Camp, & Orsulic-Jeras, 2000)
cognitive intervention

Therapeutic Recreation
Recreation therapy, also known as therapeutic recreation, is a systematic
process that incorporates activity-based interventions to address the
assessed needs of individuals with illness and/or disabilities (American
Therapeutic Recreational Association, 1987). The purpose of the pro-
cess is to improve or maintain physical, cognitive, social, emotional,
and spiritual functioning to facilitate full participation in life (National
Council for Therapeutic Recreation Certification, 2016). Recreational
therapists can be found as part of the healthcare team working with
people diagnosed with disabilities in a variety of settings, including
nursing homes, hospitals, adult day centers, and psychiatric hospitals.
Most therapeutic recreation assessments begin by gathering infor-
mation about the person, such as past leisure interests and hobbies,
education, career, and family and spousal history. The idea is to match
a persons past interests with current level of functioning. For example,
an expert Bridge player no longer able to process the complexity of the
card game may enjoy a simplified game of cards, such as Go Fish or War.
Or a person with severe physical limitations interested in bicycle riding
might enjoy an adapted bicycle. Research on therapeutic recreation in
nursing homes shows great benefits, including reduced falls and inju-
ries related to falls; reduced challenging behaviors among those with
dementia, which in turn reduces the use of psychotropic medications
Introduction 3

and chemical restraints; decreased symptoms of depression and anxiety;

decreased apathy and increased engagement; and improved subjective
well-being and quality of life (Buetner, 2001).

Montessori-Based Dementia Programming

Montessori-Based Dementia Programming was developed in the early
1990s by Dr. Cameron Camp of the Myers Research Institute at Meno-
rah Park Center for Senior Living (Camp, 1999; Judge et al., 2000; Ma-
hendra et al., 2006). The approach draws from the early work of Maria
Montessori, a physician in Italy. According to the American Montessori
Society, programming based on this approach includes uninterrupted
blocks of work time, and guided choice of work activity. In addition,
a full complement of specially designed Montessori learning materi-
als is meticulously arranged and available for use in an aesthetically
pleasing environment.
An example of a Montessori learning material is dressing frames,
which are fabric with zippers or buttons stretched over 5 x 5 frames.
Practice with zipping and buttoning can help with dressing oneself.
Materials are designed in control of error and allow a person to deter-
mine if he or she has completed an activity correctly.
Cameron Camp and his wife developed the Montessori approach
while caring for their daughter who had a learning disability. Eventually,
Camp began to use the approach with older adults living with dementia
by building on their current strengths and abilities as well as modifying
the environment to best support engagement in activities. This unique
programming incorporates rehabilitation principles, including guided
repetition, task breakdown, and progressing from simple to complex.
An example of a Montessori-Based Dementia Program activity is the
seashell match, where seashell pairs are outlined on a template, one
seashell is placed on the matching outline, and the person engaged in
the activity finds the matching seashell that completes the pair.

Cognitive Intervention
Cognitive intervention involves assessment and treatment approaches
that improve and/or maintain an individuals functional cognitive and
communicative abilities in everyday environments. In dementia care,
cognitive intervention approaches often capitalize on the persons cog-
nitive strengths and are guided by care providers trained in providing
verbal cues as well as modifying the environment (American Speech-
Language-Hearing Association, 2005; Bayles & Tomoeda, 1997). Envi-
ronmental modifications can include visual aids to assist people with
attention, orientation, memory, and problem solving. In some cases,
 4 The Connections Activity Program for People with Dementia

cognitive intervention may be guided by family members to minimize

error responses and feelings of frustration (Clare, Wilson, Breen, &
Hodges, 1999).

Connections Field-Testing
The Connections program was field-tested using community engagement
or service-learning projects. Results of two service-learning projects are
reported in the American Journal of Recreation Therapy (Braddock
& Phipps, 2010, 2011). The first project was designed as a feasibility
study to examine activity engagement in people with cognitive impair-
ment through partnered volunteering, which involved matching them
with undergraduate students. The goal of partnered volunteering was
to provide opportunities for those with cognitive impairment living in
the community to re-engage in activities with the assistance of student
visitors. Using the Connections Activity Intervention Guides for spe-
cific activities (e.g., gardening, painting; described later in this book),
the students engaged their partners in carefully selected and adapted
activities over an 8-week period. Cognitive and engagement observa-
tions were completed before and after programming.
Results indicated that 11 of 12 individuals successfully engaged in
an activity that once held meaning in their lives. Those with mild cogni-
tive impairment self-initiated activities when these were set up for them
and easily accessible; those with more severe cognitive impairment were
more likely to self-initiate activity following prompting by the students.
Moreover, caregivers reported significantly reduced burden and were
also more confident in implementing activities themselves following the
student-delivered program.
Given these positive outcomes, the Alzheimers Disease Research
Award Fund at the Virginia Center on Aging at Virginia Commonwealth
University provided funding to examine activity selection and set up
for a larger group of people with cognitive impairment. To more fully
understand the level of support needed for successful partnered vol-
unteering, 16 individuals in the intervention group were matched with
those in the comparison group. Individuals and caregivers in the inter-
vention group received regularly scheduled weekly student visits for
8 weeks, whereas the comparison group received activity selection
and setup in the home in one visit. Results indicated that customized
activity selection and setup promoted high levels of physical and ver-
bal engagement in both groups. Compared with caregivers who did
not receive student visits, caregivers with student support in the in-
tervention group reported significant reduction in burden. This finding
Introduction 5

is important because having a facilitator (activity professional, health

aide, volunteer) may be especially helpful to caregivers by providing
consistent support to help a person with cognitive impairment remain
engaged in meaningful activity.
A federal grant from the Administration on Aging through the
Virginia Department for Aging and Rehabilitative Services was de-
signed to examine the impact of the Connections program on caregiver
burden, stress, and the mental health of rural caregivers, the results
of which were published in SAGE Open (Werntz, Dodson, Schiller,
Middlebrooks, & Phipps, 2015). These results tell us that home visits
using the Connections program are beneficial for reducing caregiver
stress as well as for supporting and maintaining activity engagement
among those with mild cognitive impairments.
From the early service-learning projects, the Connections pro-
gram grew into a larger community project that helped us to develop
the set of tools outlined in this book to engage people with cognitive
impairment in activities that once held meaning in their lives.

Conclusion
The Connections approach assists care professionals, family members,
and so forth in modifying an environment for people with cognitive
impairment to best support communicative behaviors and engagement
in life. The Connections program is a field-tested activity interven-
tion based on the theoretical underpinnings of therapeutic recreation,
Montessori-Based Dementia Programming, and cognitive intervention,
which generally rely on an individuals strengths, abilities, and interests
in creating supportive environments. Chapter 1 details the steps of the
Connections Activity Program.