Adult Day Program services for seniors with dementia: An innovative model of community–college partnership (Innovative Practice)

Abstract

This study presents the case of an innovative Adult Day Program model resulting from a community–college partnership, with a formative evaluation of its contributions. A triangulation of data sources were used (existing documents, seniors' records, survey of caregivers). An overview of the historical development of the Adult Day Program model, and its underlying partnership, is presented. The model demonstrated feasibility and satisfaction by the community served, and opportunities for students’ training in real settings. Province-wide efforts should support the expansion of services based on this model, which may also be replicated in other environments to complement traditional long-term care services.

Keywords

Adult Day Program caregivers dementia formative evaluation seniors

Introduction

In recent years, Canada has been facing an “epidemic” of dementia, described as the most significant cause of disability among persons aged 65 years and above (Dudgeon, 2010). This leads to significant social and economic burden, and creates pressure on health care providers and the overall health care system (Dudgeon, 2010).

The federal government’s role in supporting elderly with dementia and their caregivers has been limited mostly to funding dementia research and providing care to specific populations (Dudgeon, 2010). Seniors’ needs in terms of home health services and social support remain either unmet or partially met (Canadian Medical Association, 2016). A recent study on family caregivers in Canada called for a focus on caregivers’ support as being critical given the existing structure of the health system that heavily depends on them (Lilly, Robinson, Holtzman, & Bottorff, 2012). Adult day services/programs present opportunities to prevent caregivers’ burnout and provide help and relief for family members caring for a relative with dementia (Gaugler et al., 2003; Grinberg et al., 2007; Lilly et al., 2012). Yet, despite their potential benefits, limited research has investigated their feasibility and contribution to community services for people living with this condition and their families.

To date, minimal systematic efforts in the development of Adult Day Program (ADP) services have been observed, and limited information is available on the models that may be successful. This paper addresses this area and presents the case of an innovative community–college partnership in Canada, between one of the largest community colleges in Ontario and a local community resource center, which resulted in an ADP initiative.

ADP history and development

The ADP program was developed as a joint pilot project between a local community resource center and one of the largest Colleges in Ontario through funding, in part, from the Champlain Local Health Integration Network (LHIN). It is based in a simulation apartment at the college which had been originally funded by the Ministry of Health and Long-Term Care (MOHLTC), and developed to provide a practice/training space for students in the Personal Support Workers’ (PSW) and Occupational Therapy Assistant (OTA)/Physiotherapist Assistant (PTA) programs.

In order to maximize the use of this newly developed space, the college considered the option of leveraging the simulation apartment to introduce an ADP, which would provide respite services for caregivers of elderly with middle stage dementia, in addition to students’ training. The rationale for offering services was validated by the confirmed need within the Champlain LHIN, representing this regional area, for additional adult day services/programs spaces. Subsequently, the simulation apartment was modified to accommodate and host 10 seniors with dementia per day, three days a week (Thursday, Friday, Saturday) starting February 2016.

The program has practices in place that support care coordination and planning through the use of protocols enabling structured and proactive communication with caregivers and members of the care team in the community. For this purpose, a coordinator is usually assigned to each senior client/caregiver. The coordinator conducts weekly follow-ups with the caregiver and provides support and referrals on a need basis when issues arise with the senior client with dementia. Individualized care plans and assessment data are also shared with the seniors, caregivers, and health care providers.

The program operates 50 weeks per year and receives elderly three days a week (Thursday, Friday, Saturday), with different people presenting on each of these three days; a full day schedule is usually planned for them. Hence, at any point in time, a total of 30 unique seniors are enrolled in the program, with 10 different people showing on each day. The seniors arrive at 10 am and socialize with the group for an hour. Then, they participate in two consecutive sessions, involving fitness fun and cognitive activity, until noon when they have lunch. Between 1:30 pm and 3:00 pm, a physical activity session is organized followed by a theme presentation. The elderly have a snack at 3 pm, then they participate in a media moment and walk around the block until 4 pm when they leave the program. It is important to note that the design of the apartment that hosts the ADP includes diverse section areas (e.g. kitchen, bed, sitting area, etc.) and offers seniors a comfortable and safe environment and flexibility to rest and relax as needed.

The program employs a program coordinator (0.8 FTE) and two program support workers (1.6 FTEs). Over a year period (2016–2017), the program provided services for a total of 52 elderly who were on the wait list for ADP services, accounting for 152 attendance days. The daily cost to the client is CAN $23.50 for ADP services and CAN $11 for transportation when required; these fees are set by the community resource center. The clients are responsible for paying these fees; however, full or half subsidy is available for people who need assistance.

The program also presents training opportunities for OTA/PTA and PSW students enrolled at the college, who can apply for placement in this site. In its first year (2016), the OTA/PTA program graduated 36 students, and every year, around 90 students graduate from the PSW program. Hence, the simulation apartment hosting the program constitutes an educational hub for learning and training. And the program specifically creates opportunities for students to get hands-on training on working with seniors with dementia, and serves the community by alleviating the burden of long wait times and limited resources available to support eldelry living with this condition, as well as their families.

Exploratory formative evaluation

A formative evaluation of the ADP contributions to the community and students’ training was conducted. Triangulation of data sources were leveraged including existing documents, seniors' records, and a survey of caregivers (Table 1). Given the critical cognitive and behavioral condition of the elderly, all data related to them were either extracted from existing databases or collected through the caregivers’ survey.

Table 1.

Measures and data sources.

Dimensions and measures	Existing records/documents	Caregivers’ survey
ADP initiative
ADP development	✓
ADP operations	✓
General information
Seniors’ characteristics		✓
Caregivers’ characteristics		✓
Role of the family physician		✓
Seniors’ condition
Behavioral problems		✓
Level of activities		✓
Caregivers’ burden
Caregivers’ worry and strain		✓
Support services		✓
Satisfaction with the ADP		✓
Utilization of services
# Days in the ADP program	✓
# ER visits	✓
# Slips, trips, falls	✓
# Hospital admissions	✓

Measures and data sources

Caregivers’ survey

Existing scales based on prior research on elderly with dementia and their caregivers were leveraged to identify the relevant measures to use (Barnes et al., 2015; Galasko et al., 1997; Gaugler et al., 2003; Lawton, Brody, & Saperstein, 1989; Teri et al., 1992). The caregivers’ survey was divided into two parts. The first part included questions on the seniors’ condition in relation to behavioral problems and their level of activities using a scale adapted from Teri et al. (1992). Following Gaugler et al.’s (2003) approach, five activities of daily living (ADLs) and five instrumental activities of daily living (IADLs) were assessed to determine the level of assistance required by the seniors to complete personal and instrumental daily tasks.

The second part of the caregiver’s survey included questions that assessed caregivers’ worry and strain, support services, and satisfaction with the program. An eight-item scale measured the stress and worry faced by caregivers when trying to meet the demands of this role (Gaugler et al., 2003; Zarit et al., 1998). Specific questions estimating the daily time spent by caregivers assisting/managing ADLs, IADLs, or behavioral problems (Gaugler et al., 2003) were also included. Caregivers indicated the number of support hours that they paid for (out of pocket) over the past month. Last, five questions measured the level of caregivers’ satisfaction with the program, and additional background questions captured the seniors' and caregivers’ characteristics, as well as the role of the family physicians in the care of the elderly with dementia.

Existing documents and records

Internal organizational documents related to the program initiative, and input from stakeholders involved in the earlier planning of this initiative, were consulted to describe the program history and its development. Data on the utilization of services and number of days spent in the program were extracted from existing records. Specifically, the number of emergency room (ER) visits, the number of slips/trips/falls as well as the number of hospital admissions during the seven-month period preceding the study (i.e. September–March 2016), and while enrolled in the program, were extracted.

Data collection and analysis

The self-administered caregivers’ survey was distributed to a sample of 29 caregivers one year after the program became operational. This sample represents the total number of caregivers for seniors enrolled in the program at the specific period of time when this evaluation was conducted. A total of 21 caregivers completed the survey, representing a 72.4% response rate.

Ethics approval was granted from two institutional review boards for this evaluation, the College Research Ethics Board and the University of Ottawa Research Ethics Board. Descriptive data analyses were conducted on SPSS to provide an overview of the seniors’ and caregivers’ characteristics as well as to present information on the condition and caregivers’ burden.

Overview of seniors with dementia and their caregivers

Seniors’ characteristics, behavioral problems, and level of activities

Table 2 presents an overview of the seniors receiving services from the program. A relatively equal number of men and women benefitted from the program, and the majority had comorbidities. The average age was 81 years; around one-third attending the program had only reached high school or college level of education. All, except one, had a regular family physician, but only 66% were being seen by a specialist regularly. The average duration since diagnosis with dementia was around 44 weeks. Over a seven-month period, the majority (62%) did not have any ER visits nor slips/trips/falls (67%). The average hospital admissions was low (mean = 0.2, range = 0 to 3) with around 86% of seniors having with no admissions.

Table 2.

Profile of the patients in the Adult Day Program (ADP).

	N (total = 21)	%
Gender
Male	11	52.4
Female	10	47.6
Highest level of education
High school/college	10	47.6
Undergraduate	2	9.5
Graduate	6	28.6
Other	3	14.3
Co-morbidities
None	6	31.6
One	6	31.6
Two	2	10.5
Three or more	5	26.3
Patient has regular family physician
Yes	20	95.2
Patient sees regular specialist
Yes	14	66.7
	Mean (SD)	(Min–Max)
Age (years)	81.0 (6.8)	(68–91)
Duration since diagnosis (months)	44.5 (22.5)	(2–84)
Days spent in the ADP	37.1 (14.1)	(9–54)
Emergency room visits	0.5 (0.7)	(0–2)
Slips/trips/falls	0.7 (1.3)	(0–5)
Hospital admissions	0.2 (0.7)	(0–3)

SD: standard deviations; Min: minimum; Max: maximum.

According to their respective caregivers, the elderly with dementia exhibited behavioral problems that varied in frequency (Table 3). The rate of occurrence of behavioral problems associated with emotions, confusion, and extreme situations was infrequent. The frequency of other behaviors that may have direct impact on caregivers was mild to moderate in some instances. For example, not recognizing people, being unable to keep occupied, following the caregiver around, being restless and agitated, and waking the caregiver up at night were among the most frequently occurring, although more than half of the seniors only manifested these behaviors rarely.

Table 3.

Patients’ behavioral problems and level of activities.

Patients’ behavioral problems		Rate of occurrence^a		Don’t know/not applicable
Patients’ behavioral problems		Mean (SD)	(Min–Max)	N	%
Trying to wander away		0.8 (2.0)	(0–4)	1	4.8%
Not recognizing people		2.5 (1.9)	(0–4)	1	4.8%
Being unable to keep occupied		2.5 (1.5)	(0–4)	–	–
Following caregiver around		2.5 (2.2)	(0–4)	1	4.8%
Being restless and agitated		2.2 (1.3)	(0–4)	–	–
Being suspicious		1.5 (1.5)	(0–4)	–	–
Waking caregiver up at night		2.3 (3.1)	(0–4)	1	4.8%
Appearing sad		1.5 (1.4)	(0–4)	–	–
Becoming angry/aggressive		1.8 (2.1)	(0–4)	1	4.8%
Having hallucinations		1.9 (3.2)	(0–4)	3	14.3%
Showing inappropriate sexual behavior		0.9 (2.7)	(0–4)	2	9.5%
Getting into a situation the caregiver could not handle		1.0 (2.7)	(0–4)	2	9.5%
Patients’ level of activities	Not applicable	Independently	With supervision	With physical help
	N (%)	N (%)	N (%)	N (%)
Bathing	–	7 (33.3%)	10 (47.6%)	4 (19%)
Eating	–	15 (71.4%)	5 (23.8%)	1 (4.8%)
Grooming	–	11 (52.4%)	8 (38.1%)	2 (9.5%)
Dressing	–	12 (57.1%)	7 (33.3%)	2 (9.5%)
Toileting	–	18 (85.7%)	1 (4.8%)	1 (4.8%)
Housework	4 (19.0%)	2 (9.5%)	8 (38.1%)	7 (33.3%)
Shopping	4 (19.0%)	–	10 (47.6%)	7 (33.3%)
Cooking	10 (47.6%)	1 (4.8%)	6 (28.6%)	4 (19.0%)
Laundry	9 (42.9%)	1 (4.8%)	3 (14.3%)	8 (38.1%)
Transportation	7 (33.3%)	–	3 (14.3%)	11 (52.4%)

SD: standard deviation; Min: minimum; Max: maximum.

^aAll questions assessed on a (0–4) scale: 0 = never occurred, 1 = infrequently or not in the past month, 2 = 1–2 times in the past month, 3 = 3–6 times in the past month, 4 = occurs daily or more often.

Most seniors in the program were able to perform ADLs (e.g. eating, toileting) either independently or with supervision (Table 3). Only one-third of them were able to bath independently. IADLs (e.g. cooking, laundry, transportation) were reported as not applicable for a considerable number of them. Among those who were performing IADLs, the majority required supervision or physical help (e.g. shopping, transportation); only one person was able to cook and do the laundry, respectively, and two were able to do housework, independently.

Caregivers’ characteristics, worry, strain, and support

Table 4 presents the characteristics of the surveyed caregivers for seniors enrolled in the program. The majority of the caregivers were women (86%), around 64 years old, retired (62%), and had completed an undergraduate or graduate university level of education (67%). Interestingly, more than 85% were married and 62% of these reported being a spouse of a patient. A total of 76% reported living with the patient. The average duration of being a primary caregiver was considerable (8.4 years); 20% indicated having been a primary caregiver for more than 15 years. The highest percent of caregivers reported an annual income of less than CAN $50,000 (47%), as compared to 20% with an income higher than CAN $75,000.

Table 4.

Profile of the caregivers of patients enrolled in the Adult Day Program (ADP).

	N (total = 21)	%
Gender
Male	3	14.3
Female	18	85.7
Highest level of education
High school/college	7	33.3
Undergraduate	6	28.6
Graduate	7	33.3
Doctorate	1	4.8
Marital status
Married	18	85.7
Divorced	2	9.5
Widowed	1	4.8
Work status
Employed, full-time	4	19.0
Not employed	4	19.0
Retired	13	61.9
Annual caregivers’ income (CAN$)^a
<25,000	3	20.0
25,000–49,000	4	26.7
50,000–74,000	5	33.3
≥75,000	3	20.0
Living with the patient
Yes	16	76.2
Relationship to the patient
Wife	9	42.9
Husband	4	19.0
Son	1	4.8
Daughter	6	28.6
Friend	1	4.8
	Mean (SD)	(Min–Max)
Age (years)	66.4 (13.6)	(39–85)
Duration as primary caregiver (years)	8.4 (11.4)	(1–50)

SD: standard deviation; Min: minimum; Max: maximum.

^aSix caregivers did not provide this information.

Caregivers’ worry and strain were assessed using measures that reflect their psychological and mental well-being (Table 5). On a (1–4) scale, the caregivers reported moderate to high frequency of occurrence of: Worry about their relative (43% reporting “all the time”), thinking about arrangement for care, and uncertainty about what to expect with the situation of their relative with dementia. Feeling tense and wishing to be able to take more breaks were also moderate. Interestingly, the mean for not being able to care for the client at home if the situation continues, based on the caregivers’ responses, was 2.0.

Table 5.

Caregivers’ worry, strain, and support.

Caregivers’ worry and strain	Frequency of occurrence^a
Caregivers’ worry and strain	Mean (SD)	(Min–Max)
The caregiver worries about his/her relative (i.e. the patient)	2.9 (1.1)	(1–4)
The caregiver has difficulty concentrating on activities	2.1 (1.0)	(1–4)
The caregiver thinks about the arrangement for care	2.6 (0.9)	(1–4)
The physical strain of caring for the patient is more than what the caregiver can take	1.8 (0.8)	(1–4)
The caregiver feels more and more tense as the days go on	2.3 (0.9)	(1–4)
The caregiver wishes he/she could take more breaks	2.3 (0.9)	(1–4)
The caregiver does not know what to expect in relation to the situation with his/her relative (i.e. the patient)	2.5 (1.1)	(1–4)
If things continue, the caregiver will not be able to care for the patient at home	2.0 (1.0)	(1–4)
Caregiving support	Mean (SD)	(Min–Max)
# Hours of paid support for the past month (excluding ADP^b)	8.1 (13.6)	(0–40)
# Hours/day spent by the caregiver dealing with daily living activities (e.g. bathing, eating, grooming, etc.)	2.1 (1.8)	(0–6)
# Hours/day spent by the caregiver dealing with other activities (e.g. housework, shopping, cooking, etc.)	2.8 (2.4)	(0–10)
# Hours/day spent by the caregiver dealing with memory loss	5.3 (8.8)	(0–24)
# Hours/day spent by the caregiver dealing with behavioral problems	3.3 (7.8)	(0–24)
# Hours/day spent by the caregiver supervising the patient	8.9 (9.8)	(0–24)

SD: standard deviation; Min: minimum; Max: maximum.

^aAll questions assessed on a (1–4) scale: 1 = never and 4 = all the time.

^bAdult Day Program services at AC.

The average number of hours of paid support reported by caregivers over a month period was 8.1 hours (Table 5); three caregivers out of 21 indicated paying for 25, 32, and 40 hours of support (out of pocket) every month. The mean number of hours spent daily by caregivers dealing with ADLs and IADLs was 2.1 and 2.8 hours, respectively. Caregivers also reported spending, on average, 5.3 hours daily dealing with memory problems and 3.3 hours dealing with behavioral problems of the seniors; in both cases, two caregivers reported 24 hours dealing with these events. Most importantly, the average daily time spent supervising the elderly with dementia by their respective caregivers was almost 9 hours.

Caregivers’ satisfaction with the ADP was very high (Table 6). The majority indicated that the skills of students and people working at the program, the services they provide, and the physical environment were very good. The caregivers also reported that the care received by the seniors was very good, and that they would recommend the program to others.

Table 6.

Caregivers’ satisfaction with the Adult Day Program (ADP).

	Mean^a	(Min–Max)
Level of caregivers’ satisfaction with…
The skills of workers/students at the ADP	3.8 (0.4)	(3–4)
The services at the ADP	3.9 (0.3)	(3–4)
The physical environment at the ADP	3.9 (0.3)	(3–4)
The feedback received from the ADP about the caregiver’s relative (i.e. the patient)	3.6 (0.7)	(2–4)
The care received by the patient	3.9 (0.2)	(3–4)
	N	%
The caregiver would recommend the ADP to others	20^b	100%

SD: standard deviation; Min: minimum; Max: maximum.

^aAll questions assessed on a (1–4) scale: 1 = not acceptable and 4 = very good.

^bOne answer was missing.

Discussion

This paper presents an innovative practice model that improves access to services for seniors with dementia in the community and provides respite for their caregivers. The program allowed seniors to have timely access to services in the community, which may limit the fast progression of their condition. This is particularly important as these persons were on a wait list for community services, which is unpredictable and not accurately estimated. With increased levels of seniors' engagement through stimulating activities, the rates of behavioral problems are expected to decrease, and psychosocial services have been discussed as having positive impacts on patients’ functioning (Gaugler et al., 2003). The structured services provided in this ADP model present examples of engagement activities that may have long-term benefits on seniors’ condition and behavioral problems. Given the limited access to a specialist (only 66% were regularly followed by a specialist), the program allows close monitoring of the elderly’s condition, and subsequent referral and guidance in navigating the health care system as needed. The individualized care plans and assessment data collected on regular basis allow the seniors to benefit from the communication of this information with their health care providers.

Caregivers face significant challenges and stress caring for their relatives who have dementia. This has been echoed in their responses indicating a daily average of 9 hours supervising the senior person they cared for, and a moderate to high levels of worry, tension, and uncertainty about what to expect in relation to these seniors. The majority of caregivers live with the elderly with dementia, hence necessitating caring for them around the clock. Since around 40% of caregivers are still employed, the senior person they care for may end up being left alone during the day, although their condition may not permit in certain circumstances. Paying for extra hours of support can be burdening, especially that close to 50% of the caregivers reported an income of less than CAN $50,000. Hence, the program provides an opportunity for these caregivers to remain in the workforce and contribute to society, while being reassured that the elderly they care for are in good hands.

The ADP demonstrated feasibility and continuity in relation to the number of patients served, the cost and resources used, and the extent to which the services provided to the seniors and their caregivers address their needs and are performed satisfactorily. The program fostered collaboration between a community resource center and an academic institution, which increased access to services for seniors and their caregivers and allowed students to get hands-on training in a real-life setting with seniors. Most importantly, it allowed seniors living with dementia to benefit from a carefully designed, safe and flexible environment, which was developed to ensure their participation in independent cognitive and fitness activities.

The ADP presents an innovative practice model of community–college partnership that can be replicated in different countries and contexts in light of the lower level synergies that can be developed at the community level between educational institutions and services centers and organizations. This model may also be integrated within other enviornment like nursing homes and retirement homes to complement traditional long-term health care delivery, and thus improve the residents’ quality of life and functional ability, and limit the fast progression of dementia. Despite its early positive contributions, it is important to note that the assessment and data collection were conducted at one point in time, one year after the program became operational, which precluded further examination of its long-term impacts. It was also not possible to have a thorough examination of the impacts on students’ training as well, given the short duration of the study and newness of the OTA/PTA program (launched in 2016).

With the aging of Canadian baby boomers, ageing in place becomes a necessity in light of the limited resources and institutions that can potentially host the growing number of seniors with dementia and other chronic conditions. In Ontario, 14 Community Care Access Centers have been created that are responsible for home care and long-term community care (Canadian Medical Association, 2016). Yet, seniors’ home health services and social support needs remain mostly unmet, with data on actual wait times being scarce and inaccurate (Canadian Medical Association, 2016). This calls for the need to scale up and expand successful innovation models in home care across the country in order to improve access to services by seniors (Canadian Medical Association, 2016). This paper presents the case of an innovative ADP model that demonstrated early benefits and opportunities to alleviate caregivers’ burnout and provide respite for family members caring for a relative with dementia. The integration of practicum training for professional students from colleges and universities in settings like this ADP is a prime advantage allowing both seniors and students to benefit from this synergy. Province-wide efforts should coordinate a more systematic and organized development of ADP services that would address the existing gaps in the health care system, especially at the community level, and allow elderly and their caregivers to have timely access to the needed services that would otherwise remain unmet.

Footnotes

Acknowledgement

The author would like to thank Algonquin College and the Western Ottawa Community Resource Centre for enabling the completion of this project.

Declaration of conflicting interests

The author(s) declared following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Financial support/compensation for this project was received from Algonquin College. A report based on this evaluation was submitted to the two partner organizations involved in this model of community care services, Algonquin College and the Western Ottawa Community Resource Centre.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this project was received from Algonquin College, one of the two partner organizations in this model of community care services for seniors with dementia.

Mirou Jaana is an associate professor at Telfer School of Management in the University of Ottawa. Her research interests and projects in the areas of Health Care Management and Health Informatics include: evidence-based health care management; telehomecare for the management of chronic diseases; digital health and seniors; information technology innovation and implementation in health care organizations; and electronic medical records. She published articles in top peer-reviewed journals including the American Journal of Managed Care, Health Care Management Review, Evaluation and the Health profession, Journal of Medical Internet Research, International Journal of Medical Informatics, and Journal of the American Medical Informatics Association. She has presented at international conferences, was member of grant selection committees and editorial boards, and currently serves as a referee for several journals and conferences in her field.

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