Using Occupations to Improve Quality of Life, Health

and Wellness, and Client and Caregiver Satisfaction for

People With Alzheimers Disease and Related Dementias
Lori Letts, Mary Edwards, Julie Berenyi, Kathy Moros, Colleen ONeill,
Colleen OToole, Colleen McGrath

KEY WORDS
 activities of daily living
 Alzheimer disease
 health promotion
 interpersonal relations
 leisure activities
 quality of life

Lori Letts, PhD, OT Reg. (Ont.), is Associate Professor

and Assistant Dean, Occupational Therapy Program,
School of Rehabilitation Science, McMaster University,
Hamilton, Ontario.
Mary Edwards, MHSc, OT Reg. (Ont.), is Associate
Clinical Professor, School of Rehabilitation Science,
McMaster University, Hamilton, Ontario.
Julie Berenyi, OT Reg. (Ont.), is Occupational
Therapist, Hamilton Health Sciences, St. Peters Hospital,
Hamilton, Ontario.
Kathy Moros, OT Reg. (Ont.), is Occupational
Therapist, Hamilton Health Sciences, St. Peters Hospital,
Hamilton, Ontario.
Colleen ONeill, OT Reg. (Ont.), is Occupational
Therapist, McMaster Family Health Team, Hamilton,
Ontario.

An evidence-based review was undertaken to answer the question, What is the evidence for the effect of
interventions designed to establish, modify, and maintain activities of daily living (ADLs), instrumental
activities of daily living (IADLs), leisure, and social participation on quality of life (QOL), health and wellness, and client and caregiver satisfaction for people with Alzheimers disease and related dementias?
A systematic search of electronic databases and application of inclusion and exclusion criteria guided the
selection of 26 articles. Limited high-level evidence on ADL interventions was identified. IADL interventions
for people living in the community showed promise. Tailored and activity-based leisure interventions were
common and seemed to have positive impacts on caregiver satisfaction, and some interventions had
positive results for client well-being and QOL. Social participation interventions focused on people with
dementia still able to engage in verbal social interactions; these interventions had at least short-term positive effects.
Letts, L., Edwards, M., Berenyi, J., Moros, K., ONeill, C., OToole, C., et al. (2011). Using occupations to improve quality of
life, health and wellness, and client and caregiver satisfaction for people with Alzheimers disease and related
dementias. American Journal of Occupational Therapy, 65, 497504. doi: 10.5014/ajot.2011.002584

he objectives of this review were to systematically search the literature and

then critically appraise and synthesize the applicable evidence to address the
focused question, What is the evidence for the effect of interventions designed to
establish, modify, and maintain activities of daily living (ADLs), instrumental
activities of daily living (IADLs), leisure, and social participation on quality of life
(QOL), health and wellness, and client and caregiver satisfaction for people with
Alzheimers disease (AD) and related dementias?

Background and Statement of Problem

Address correspondence to Rene Padilla, PhD, OTR/L,

FAOTA, Office of Academic and Student Affairs, Criss III
Building, Suite 154, School of Pharmacy and Health
Professions, Creighton University, 2500 California Plaza,
Omaha, NE 68178; rpadilla@creighton.edu

People with AD or related dementias frequently experience challenges in

maintaining their abilities to participate in occupations that contribute to their
QOL, their health and wellness, and their own and their caregivers satisfaction
(Egan, Hobson, & Fearing, 2006). Occupational therapy practitioners organize
their understanding of occupations into eight main areas: ADLs, rest and sleep,
IADLs, education, work, play, leisure, and social participation (American Occupational Therapy Association [AOTA], 2008). Of these, five are most relevant to
the population of people with AD or related dementias, most of whom are older
adults, retired from paid work. Relevant areas of occupation include ADLs, which
consist of caring for oneself through such activities as bathing, toileting, eating,
and dressing; rest and sleep; IADLs, which include household management and
community activities such as meal preparation, cleaning, driving, and banking;
leisure, which includes the free-time activities in which people engage for pleasure;

The American Journal of Occupational Therapy

497

Colleen OToole, MSc (OT), OT Reg. (Ont.), is

Occupational Therapist, CBI Home Health, Hamilton,
Ontario.
Colleen McGrath, MSc (OT), OT Reg. (Ont.), is PhD
Student, Health and Rehabilitation Sciences (Health and
Aging), University of Western Ontario, Hamilton.

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and social participation, which includes engaging with

family, friends, and others in community contexts. Family
and other caregivers provide a high degree of support as AD
or related dementias progress, frequently assisting the person with dementia in the completion of tasks or assuming
responsibility for activities that the person can no longer
manage even with assistance.
Because AD and related dementias have a major
impact on the occupations of people with dementia and
their caregivers, occupational therapy practitioners are
often asked to assess and provide interventions to optimize occupational performance. Referrals may come to
community-based occupational therapy practitioners for
services to people with AD or related dementias who continue to live in their own homes with primary support from
informal caregivers. Other referrals may come via residential
or long-term care facilities, with a focus on people with AD
or related dementias, their families, and formal caregivers in
the facilities. Occupational therapy practitioners work to
maintain or modify occupations to promote health, QOL,
and client and caregiver satisfaction. The effectiveness of
these interventions has not been clearly established.

Method for Conducting the

Evidence-Based Review
Arbesman and Lieberman (2011; this issue) summarized
the method for this review. We initially completed the
search in 2005; however, during the process of appraising
and synthesizing the evidence for the review, we monitored
the occupational therapy literature for new publications
with direct relevance to the topics of the search. When the
original search was conducted, the Occupational Therapy
Practice Framework (AOTA, 2002) did not include sleep
and rest as distinct areas of occupation; they now appear in
the second edition of that document (AOTA, 2008).
Therefore, this review is focused on only four types of
occupations: ADLs, IADLs, leisure, and social participation. Sleep and rest are considered ADLs.

Results
The 2005 literature search and application of the inclusion
and exclusion criteria resulted in 24 articles selected for the
review. During the review process, we identified 2 other
studies from the occupational therapy literature (1 in 2007
and 1 in 2008) that had direct relevance to the topic, and
we decided to include them in the review, resulting in
a total of 26 articles included in the review.
Articles reviewed included 7 Level I (systematic
reviews, meta-analyses, and randomized controlled trials

[RCTs]), 1 Level II (two-group, cohort, or casecontrol

studies in which assignment to a treatment or a control
group is not randomized), 11 Level III (one group, nonrandomized, before and after, or pretest and posttest studies), 7 Level IV (single-case experimental design, sometimes
reported over several participants), and no qualitative
reports.
Supplemental Table 1, which contains information
about each of the studies (objectives, design, interventions,
outcomes, results, and limitations), is available online at
www.ajot.ajotpress.net (navigate to this article, and click
on supplemental materials).
Activities of Daily Living
No Level I or II studies and only 5 Level III studies on ADL
interventions were available for review. One study focused
on direct individual treatment that modified or improved
ADLs through the prescription of assistive devices for
residents in the early stages of dementia (Nochajski,
Tomita, & Mann, 1996; Level III, N 5 20). This pretest
posttest study (reported in two publications) focused on
the use of assistive devices with training in their use.
Participants were more likely to receive and adopt physical
devices (e.g., bathroom aids, mobility aids), with 68%
receiving them, than cognitive devices (e.g., cue cards,
speed-dial telephones), used by 48% of participants.
However, participants reported higher satisfaction with
cognitive devices. A follow-up study 12 yr after the intervention noted that device use and satisfaction had
declined, as did overall function (Yang, Mann, Nochajski,
& Tomita, 1997; Level III, N 5 10). However, only half
of the original sample could be located for followup, and of those, only 7 people with dementia were still
living.
As the disease progresses and people with dementia
experience more decline, the focus for occupational therapy
seems to shift to providing training and support to residents
with dementia and staff to prevent excess disability and to
enable remaining abilities. In particular, the focus has been
on the occupation of feeding and eating with the outcome
of maintaining health through weight maintenance. In one
study, a behavioral intervention was adopted to prevent
people with probable AD from wandering from the table at
mealtime (Beattie, Algase, & Song, 2004; Level III, N 5
3). All 3 participants had significant improvements in the
amount of time sitting at the table (ps 5 .0005, .0009, and
.0600); 2 showed significant improvements in food intake
(ps 5 .969, .000, and .000). Although no significant
difference in body weight occurred, Beattie et al. (2004)
found evidence of weight maintenance during the study.
This weight maintenance may be clinically important

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September/October 2011, Volume 65, Number 5

because all 3 participants were on a weight-loss trajectory

before the study. In a second feeding intervention study,
Van Ort and Phillips (1995; Level III, N 5 8) compared
a contextual and a behavioral intervention, both of which
were designed to increase self-feeding behaviors. Although Van Ort and Phillips reported that both groups
maintained body weight as a proxy for health, their
article did not report statistical data, making it difficult
to appraise the degree of behavioral change. Finally, a
repeated-measures study examined the impact of changing food textures on food intake and weight maintenance
(Boylston, Ryan, Brown, & Westfall, 1995; Level III,
N 5 14). The findings suggested that when people show
a behavioral intolerance for food texture, softening the diet
can increase intake and result in maintaining weight. In
addition, adjusting food texture (from regular to soft or
puree) may assist with weight maintenance, which is an
indicator of health outcome; however, this finding was
not statistically significant (p 5 .19).
One study focused on the impact of family-style meals
to improve participation and communication during
mealtime (Altus, Engelman, & Mathews, 2002; Level III,
N 5 6). The intervention resulted in modest increases in
participation (from 10% to 64%) and communication
(from 6% to 18%) during mealtimes, but only when staff
training in prompting and praising was added to the
intervention.
In summary, ADL interventions are most prevalent in
the area of feeding, with food intake and weight as common
outcomes. Although assistive devices are interventions likely
to be frequently used by occupational therapy practitioners,
we identified only one study reported in two publications
that examined use of and satisfaction with assistive devices
for people with AD or related dementias and their family
caregivers.
Instrumental Activities of Daily Living
Three Level I and 2 Level III studies focused on interventions using IADLs. Of those, 2 Level I studies and 1
Level III study focused on home-based interventions for
people living in the community. The remaining studies
reported on participants living in residential care settings.
Graff et al. (2007; Level I, N 5 135) demonstrated the
effectiveness of a community-based occupational therapy
intervention for people with mild to moderate dementia.
The intervention group of clients and their caregivers
received 10 home-based occupational therapy visits over
5 wk. People with dementia reported significantly better
QOL (effect size 5 1.3, p < .0001) and general health
status (effect size 5 0.8, p < .0001) at 6 wk, and the
findings were maintained at 12 wk. Similar findings were

reported for caregiver QOL and health status. The intervention included identifying occupational performance
issues, goal setting, and helping participants implement
compensatory and environmental strategies. These results
built on those of a previous single-group pilot study (Graff,
Vernooij-Dassen, Hoefnagels, Dekker, & de Witte, 2003;
Level III, N 5 12) that implemented a 7-wk intervention
(maximum of 10 home visits) and demonstrated positive
outcomes in satisfaction with performance for clients and
caregivers (p 5 .002).
Dooley and Hinojosa (2004; Level I, N 5 40) suggested that an occupational therapy home assessment
followed by written recommendations and one follow-up
visit to discuss the implementation of the recommendations
may improve QOL and decrease caregiver burden more
than only an initial home assessment and receipt of recommendations by mail. In comparing outcomes between
the two groups, they found significant group effects for
positive affect, activity frequency, self-care status, and
caregiver burden (p < .001).
In a study conducted in a dementia care unit,
Fitzsimmons and Buettner (2003; Level I, N 5 12) found
that a regular (daily) therapeutic cooking group for residents had a significant positive impact on behavioral
outcomes (reduced agitation and passivity). In addition, blood pressure (as a proxy for health) increased as
engagement increased and decreased as agitation decreased (p < .067), suggesting health benefits from the
intervention.
Avila et al. (2004; Level III, N 5 5) pilot tested a
neuropsychological rehabilitation intervention (including
errorless learning, memory training, and IADL training).
They noted modest improvements on most scales after
treatment. QOL improved for patients and caregivers,
but the changes were not statistically significant (for patients,
p 5 .60; for caregivers, p 5 .83). Similarly, they found a trend
toward improved cognition and ADL function. However,
participants also received pharmacological interventions, and
attributing the findings to the neuropsychological rehabilitation interventions alone is difficult.
In six descriptive case studies, Topo, Jylha, and Laine
(2002; Level IV, N 5 6) showed that an easy-to-use
telephone (with identifying photos and preprogrammed
numbers) resulted in clients slightly improved ability
to use the phone. Family caregivers reported increased
satisfaction with clients telephone use. However, the
findings are based on a family questionnaire developed by
Topo et al.
In the area of IADLs, the evidence related to homebased occupational therapy interventions for people with
AD or related dementias and their caregivers has shown

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significant promise. Two RCTs and a single-group pilot

study have demonstrated positive findings in caregiver and
client satisfaction. However, the two interventions have
major differences between them, with one involving 10
visits over 5 wk and the other involving a total of 2 visits.
Other IADL interventions that have shown some promise
include therapeutic cooking groups in a nursing home
setting and adapted telephones.
Leisure
Two Level I studies and 4 Level III studies focused on
leisure interventions. All but one study were conducted in
nursing homes or other long-term care facilities; one was
conducted in clients own homes in the community with
informal caregivers.
A randomized controlled pilot study evaluated a tailored activity program as a way to involve people with
dementia in activities (often but not exclusively leisure
based) to reduce behavioral disturbances and caregiver
burden while improving activity engagement (Gitlin et al.,
2008; Level I, N 5 60). The home-based intervention
included six home visits by an occupational therapist who
used assessment with the client and caregiver to design
activity prescriptions. The intervention was grounded in
client-centered occupational therapy practice, with emphasis on activity analysis and modification. After 4 mo,
Gitlin et al. (2008) found no statistically significant differences between the intervention and control group
participants in QOL (p 5 .095); however, in examining
outcomes with the intervention group, the program was
readily accepted by people with dementia and rated
positively by caregivers (indicating high client and caregiver satisfaction). Although QOL outcomes were not
improved, studying this intervention further with outcomes such as caregiver burden, activity, and participation may be worthwhile.
One study compared the impact of a kit-based activity
intervention with a time and attention control group on
reducing apathy and improving QOL of people in a longterm setting (Politis et al., 2004; Level I, N 5 37). Both
groups had significant improvements in all outcomes,
including QOL, but Politis et al. (2004) found no significant differences between groups, suggesting that informal interactions are as effective as expensive activity
kits in improving outcomes.
Two related studies focused on the effect of introducing
sensorimotor recreational items to family and other visitors
in nursing homes. In the first study (Buettner, 1999; Level
III, N 5 149), the items were developed and tested at two
sites, with satisfaction with visits improving significantly
during the intervention period compared with the non-

intervention period (Site 1, p < .011; Site 2, p < .000). In

a second study, satisfaction with visits again improved
significantly with the introduction of the structured activities (Colling & Buettner, 2002; Level III, N not reported). However, without a description of the sample or
sample size in this second study, it is difficult to interpret
or generalize the findings.
A cross-sectional study looked at the types of leisure
activities in which nursing home residents engaged and
their relationship to well-being (Chung, 2004; Level III,
N 5 43). Positive relationships were shown between
well-being and activities that had potential for social interaction (p < .001) across three levels of cognitive impairment experienced by nursing home residents in Hong
Kong. The study sample was small for the analyses conducted, and the analyses were cross-sectional, making it
impossible to assume that activity differences between
groups were linked to the progressive nature of dementia.
However, the findings suggested that activities that encourage social interaction might have a positive relationship to well-being.
Another study introduced music therapy to residents
of residential care homes while family members were
visiting, which resulted in a significant change in caregiver
satisfaction with visits (p 5 .017; Clair & Ebberts, 1997;
Level III, N 5 15). Caregivers measures of depression,
burden, positive and negative affect, and self-reported health
did not change. Occupational therapy practitioners may be
able to suggest music as one part of a leisure program for
clients with AD or related dementias if the goal is to improve caregiver satisfaction with visits.
Three Level IV studies were identified related to
leisure. Two studies involved the introduction of specific
kits or activities to residents of nursing homes with AD or
related dementias. Crispi and Heitner (2002; Level IV,
N 5 29) developed 10 activity kits. Family members who
used the kits during visits reported that they improved
the quality of visits and residents QOL. Rentz (2002;
Level IV, N 5 41) reported on the development and pilot
evaluation of an art intervention for people with early and
midstage dementia. The results suggested positive outcomes in well-being in terms of activity engagement. Pool
(2001; Level IV, N 5 30) described the development of
a person-centered model of care based on implementation
of individualized meaningful activities. Positive results in
well-being were reported for 57% of residents.
The findings on leisure interventions suggest that
leisure activities that involve social interaction may be the
most promising for occupational therapy practitioners to
recommend for people with AD or related dementias and
their caregivers, especially in the context of long-term care.

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Although many of the studies did not demonstrate positive

outcomes in QOL, they did have positive findings for
outcomes such as activity engagement and caregiver satisfaction with visits. Limitations in the conceptualization
and measurement of QOL for this population may be
challenging.
Social Participation
Two Level I studies, 1 Level II study, and 2 Level IV
studies focused on social participation. These studies included a variety of interventions, such as a volunteer
intervention, a life-story approach to reminiscence, and
drama. Most involved people in the early or middle stages
of dementia.
An RCT provided some evidence for caregiver satisfaction outcomes resulting from a volunteer intervention
program that consisted of walking when able, crafts,
conversation, or cognitive stimulation compared with
a wait-list control group (Wishart et al., 2000; Level I,
N 5 24). The intervention involved volunteer visitors
making weekly home visits to people with dementia. The
satisfaction data were collected only from caregivers in the
intervention group; no comparison group data exist.
Because caregivers might possibly be satisfied with any
intervention that involved trained volunteers, further
study comparing a volunteer intervention program with
an attention control intervention is warranted. Other data
presented in the article suggest that this intervention may
provide benefits in relation to caregiver burden; data on
care recipient or caregiver health outcomes would be
valuable.
A second RCT compared well-being outcomes in
a reminiscence group with those in a group participating
in general discussions and a control group receiving
no intervention (Lai, Chi, & Kayser-Jones, 2004; Level I,
N 5 101). Although the reminiscence group showed
significant improvements in well-being (p 5 .014), Lai
et al. (2004) found no statistically significant differences
between groups over time. Thus, although well-being
appears to have improved as a result of the reminiscence
intervention, the improvements were not significantly
different from those resulting from engaging people with
AD or related dementias in general conversations or no
intervention at all.
In another study, people with dementia in a psychiatric day hospital were enrolled in a drama group and their
health outcomes were compared with those of people
not selected for the group. The drama group experienced
deterioration in general health compared with those
not involved; the difference was reported as not statistically significant, although p values were not reported

(Wilkinson, Srikumar, Shaw, & Orrell, 1998; Level II,

N 5 16). Because the sample size was small and group
allocations were not random, reaching any conclusions
about this intervention as a form of social participation or
about its potential harm is difficult.
Two descriptive studies were also identified that examined interventions using social participation. In one
single-case design study, volunteers reported increased
satisfaction in social interactions with day care clients with
dementia when a memory wallet intervention was introduced (Bourgeois & Mason, 1996; Level IV, N 5 4).
The memory wallets were individualized and used by
volunteers and family visitors to guide conversations. In
a repeated-measures study, well-being was higher for day
hospital participants with AD or vascular dementia engaged in a reminiscence activity than in structured group
activities or unstructured time (p < .001; Brooker &
Duce, 2000; Level IV, N 5 25). However, carryover between group interventions was possible. Well-being was
measured during the activities, but changes in overall
well-being after the intervention were not examined.
In summary, evidence exists regarding social participation interventions for people in the early to middle
stages of AD or related dementias; many types of interactions may have positive outcomes in terms of well-being
and satisfaction with this population. No specific intervention stands out as most effective.

Summary and Discussion

We examined interventions that engaged people with AD
or related dementias in the occupations of ADLs, IADLs,
leisure, and social participation, with outcomes related to
health, well-being, and client and caregiver satisfaction.
Thus, occupation is the means through which the examined interventions were offered rather than the outcome of interest. A future review may find considering
occupational outcomes from these types of interventions
worthwhile; however, including those types of studies was
beyond the scope of this evidence-based review.
In the area of ADLs, we found it surprising that no
high-level studies were available to guide occupational
therapy practitioners to assess, plan, and implement
interventions for people with AD or related dementias
in an area of function that is significantly affected by
the condition. Most of the evidence available on ADL
interventions has a focus on feeding in mid- to late stages
of AD and related dementias. Several strategies can be used
to address self-feeding and food intake, with outcomes
such as behavior or weight as a proxy for health status.
Some promising strategies have been reported, but these

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strategies require further testing using more rigorous

designs to establish their effectiveness.
For IADL interventions, promising evidence exists on
the effectiveness of home-based community occupational
therapy interventions for people with AD or related dementias and their caregivers in the early stages of dementia.
An assessment in the home followed by environmental and
compensatory strategies appears to improve health and
QOL for people with dementia and their caregivers.
However, more study is needed to establish the minimum
number of visits required to have positive, long-term
effects. In long-term care facilities, a therapeutic cooking
group and an adapted telephone showed promise, although more rigorous research is also needed to test these
interventions.
In leisure interventions, several kit-based or activity
interventions were reviewed. Many of them were developed
for family or informal caregivers to use to structure visits
with nursing home residents with AD or related dementias.
Although the findings from these studies did not indicate
a significant improvement in QOL, other outcomes such as
caregiver satisfaction were noted to be positive. Together,
these studies suggest that offering caregivers structured
leisure activities to use during visits with people with AD
or related dementias may be appropriate, which appears to
be in line with a more recent trend to use Montessoribased activities with people with AD or related dementias
(e.g., Jarrott, Gozali, & Gigliotti, 2008). Interventions
that incorporate both leisure and social interactions do
appear to overlap; the most promising leisure interventions also involve people with AD or related dementias in
social interactions.
The social participation interventions included in this
review tended to be designed for people in the early to
middle stages of AD or related dementias, which may be
linked to the peoples verbal abilities in the early stages of
their condition. Such interventions may provide valuable
structure to guide social interactions. However, occupational therapy practitioners may want to consider the
ways in which the occupation of social participation
could be maintained even when verbal abilities decline in
the later stages of the disease. Little evidence is available
that describes or evaluates such interventions, even though
social participation is an important occupation for people
with limited verbal abilities.

Exemplars for Practice, Education,

and Research
On the basis of this evidence-based reviews findings, the
following exemplars provide summaries of the ways in

which the evidence can be applied in practice and

education.
Exemplars for Practice
Assistive devices that are either physical or cognitive
can be considered to support ADLs in people with
AD or related dementias, but their usefulness may need
to be monitored as the condition progresses.
In the community, a home-based occupational therapy intervention that includes IADL assessment and
recommendations to promote abilities may be beneficial in improving QOL and health of clients with AD
and related dementias and their caregivers.
Leisure interventions that are individually tailored or
selected from a range of activity kits may promote improved satisfaction for caregivers of people with AD or
related dementias. Occupational therapy practitioners
could be involved in designing such activities or kits.
Social participation interventions that structure conversations may be useful for people with AD or related
dementias who continue to be verbal.
Exemplars for Education
Occupational therapy students need to have a good
understanding of the ways in which occupations
change over the course of AD and related dementias
and the impact that these occupational changes have
on caregivers.
Skills in home assessment and IADL activity modification may be valuable for students in occupational
therapy programs to acquire.
A good understanding of leisure and social participation as occupations is needed; understanding activity
and occupational analysis would be beneficial to optimize the ability of future occupational therapy practitioners to design and modify occupational interventions
for people with AD and related dementias.
Exemplars for Research
Studies of higher-level design are needed to guide
occupational therapy practitioners in assessing, planning,
and implementing interventions in the area of ADLs.
More study is needed to establish the minimum number of community-based or home visits required to
have positive, long-term effects.
Therapeutic cooking groups and adapted telephones
showed promise in skilled nursing facilities, although
more rigorous research is needed to test these
interventions.
Research is needed on how social participation can be
maintained when verbal abilities decline in the later

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stages of AD. Little evidence is available that describes

or evaluates such interventions even though social participation is an important occupation for people with
limited verbal abilities. s

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