1. Department of Rehabilitation Science
The Effect of Home Monitoring Technology on Reducing Burden in Caregivers of Older Adults with Disabilities
Linda Russ, OTR, PhD
Department of Rehabilitation Science
University at Buffalo
Presented at
The NYSOTA Conference
Buffalo, NY
September 27-29, 2007

2. Introduction According to the Special Committee on Aging (2001):
As many as 52 million Americans are informal caregivers.
Nearly three-quarters of informal caregivers are women, most typically married women in her mid-40s to mid-50s employed full-time.
Population trends forecast an increase in informal caregiving needs.
Almost one-quarter of American households provide care to friends or relatives age 50 or older.
She is usually employed full-time, spending 18 hours a week caregiving.
She may be the primary caregiver for children, and increasingly grandchildren.
According to the National Family Caregivers Association, family caregivers provide 80% of the care to the frail or impaired elderly.
Often, these women are juggling career with caring for a parent, partner or spouse.
Women provide 50 percent more care than men, for longer periods of time, putting their own health, earnings, and retirement security at risk the longer they provide care.
Over 80% of frail adults who receive long-term care and support live in the community.
Prolonged caregiving takes a toll on the emotional, physical, and financial health of informal caregivers.
Estimated that caregivers lose an average of $550,000 in total wage wealth.
Social Security benefits decrease an average of $2,100 annually.
Today’s caregivers face stressors from little public support.
By 2030 one in five Americans will be age 65 or older. Four times as many Americans will be over age 85 as there are today.
The value of informal caregiving is estimated at nearly $200 billion.
Most elders prefer to be cared for at home where they can maintain a degree of autonomy and independence.

3. Introduction
Assistive device use and environmental interventions can be effective in reducing home care costs and in maintaining independence in frail elders.
(Mann, Ottenbacher, Fraas, Tomita, & Granger, 1999).
Electronic technologies have been shown to be effective in reducing caregiver burden
(Kart, Kinney, Murdoch, & Ziemba, 2002).
Caregiver literature demonstrates that reducing the demands and stressors of caregiving can decrease anxiety and depression,and improve satisfaction and physical and emotional well-being in informal caregivers.
Benefits of AD and EI can also reduce the financial and physical costs to caregivers.
Negative aspects include burden which can impact the physical and emotional health of caregivers (Schofield, Murphy, Herrman, Bloch, & Singh, 1997).
Positive aspects include the satisfaction derived from caregiving (Lawton, Kleban, Moss, Rovine, & Glicksman, 1989).

4. Identifying Caregivers
Caregivers provide support to someone who needs help. 
It doesn’t matter how many hours per week are spent providing support. 
Caregivers may live with the person they are caring for, providing assistance with daily needs, or may visit the person weekly or call regularly. 
Being a caregiver involves an investment in time, energy and support.
Are you a caregiver?  Most people who provide care for a friend or family member don’t think of themselves as a caregiver. 
You may not consider yourself a caregiver, but do you regularly:
Drive a family member, friend or neighbor to doctor’s appointments?
Make meals for someone?
Help someone with household chores such as cleaning, grocery shopping, lawn care, etc?
Make regular phone calls to someone to “check in” on them?
Provide hands-on care, including bathing, help eating, toileting, or other help?
Help someone make decisions about medical decisions?
Assist someone with personal business affairs, such as bill paying?
If you answered yes to one or more of these questions you may be a caregiver. 

5. Definitions: Informal Caregiving, Caregiver Burden, Caregiver Burnout
Informal or lay caregiving
The act of providing assistance to an individual with whom the caregiver has a personal relationship.
Caregiver burden (Kasuya, Polgar-Bailey, & Takeuchi, 2000)
Defined as the strain or load borne by a person who cares for an elderly, chronically ill, or disabled family member or other person.
It is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience.
The caregiver's perception of the burden, rather than the perception of other family members or healthcare providers, determines the impact on his or her life.

6. Definitions: Caregiver Burnout
The progression of caregiver burden to the point where the experience is no longer a viable or healthy option for either the caregiver or the person receiving care.
Goal of Health Care Providers
Lessen the demands of caregiving, prevent caregiver burden
If not possible prevent progression to burnout

7. Prevalence of caregiver burden and burnout
The prevalence of caregiver burden has been described in multiple surveys.
Results of a 1992 study by the Carers National Association indicated that:
One of every two caregivers had financial burdens
Two of every three were in ill health themselves
Other studies show that:
A large majority of caregivers have experienced fatigue, frustration, and stress as a result of caregiving
Two thirds believe that caregiving has put a strain on their marriage
One fourth have felt despair as a result of the caregiving experience

8. Effects of Caregiving
Home care of chronically ill persons has received considerable attention in recent years.
However, difficulties experienced by caregivers often are considered only after the signs of burnout are apparent.
Family members and other providers often accept responsibility for the care of those with chronic health needs.
Typically, they do this for emotional and economic reasons, not because they are proficient at, or feel comfortable with, the type of care required.
They frequently expect or are expected to assume the role of caregiver without regard for the possible emotional, physical, and financial consequences.
Objective burden refers to the caregiver's tasks or activities.
Subjective burden describes how caregivers feel about their roles
Caregivers may find themselves angry or resentful about this toll on their lives; insight into their feelings often serves only to make them feel guilty or shameful about their reactions.
Caregivers often spend a disproportionate amount of their emotional, physical, or financial resources on the person requiring care.
As time and illness progress, the responsibility may be met with decreasing enthusiasm, regardless of emotional relationships.

9. Background Caregiving has both negative and positive impacts.
Caregivers who perceive the positive rewards will be less likely to suffer the negative effects on health and financial resources, while maintain family satisfaction (Carruth, Tate, Moffett, & Hill, 1997).
Interventions should include the positive aspects of caregiving to be most effective.
Background.
The number of adults over age 65 with chronic and disabling conditions is growing (Conway-Guistra, Crowley, & Gorin, 2002).
For many community based disabled elders, informal caregivers are their only source of support (Desai, Lentzner, & Weeks, 2001).
Caregiver duties vary, but can include help with daily care, transportation, housework, bills, shopping, meal preparation, to complex medical care (Special Committee on Aging, 2001).
Negative impacts noted in the literature include burden, stress, depression, decline in perceived health, role strain, social isolation, and depletion of financial resources (Carruth, Tate, Moffett, & Hill, 1997; Dautzenberg, Diederiks, Philipsen, & Tan, 1999; England, 1996; Schofield, Murphy, Herrman, Bloch, & Singh, 1997).
Positive aspects include emotional well being and satisfaction with the caregiving role.
Physical and emotional demands beyond the caregiver’s coping abilities leave the caregiver unwell and unable to care or work (Conway-Guistra, Crowley, & Gorin, 2002).
The caregiver becomes vulnerable to fatigue or injury.
This in turn may require relocation of the elder to another family’s home or vicinity or institutionalization (Picot, Youngblut, & Zeller, 1997).

10. Lazarus’ Stress-Appraisal-Coping Model
Useful in understanding caregiver burden (Lazarus & Folkman, 1984).
Psychological stress occurs when demands or conflicts exceed resources.
Reaction to stress subject to individual’s “cognitive appraisal”.
Includes both primary and secondary forms of appraisal.
Reappraisal is a continual process, can determine the caregiver’s sense of mastery.
Environmental demands and pressures can produce stress.
Primary appraisal includes irrelevant, benign-positive, or stressful types.
3 types of stressful appraisals: harm/loss, threat, or challenge.
The distinctions between the 3 influence the effectiveness of the coping process and how it affects physical and emotional health.
Reaction is subject to individual’s interpretation between harmful and benign situations.
Lazarus calls this “cognitive appraisal”.
Includes both primary and secondary appraisals.
Primary: evaluating the significance of a transaction or event on one’s own well-being.
Secondary: the individual’s self-perceived ability to cope with the threat and determines the effectiveness of coping behaviors.
Psychological stress occurs when demands or conflicts of a situation exceed the person’s resources.
Primary appraisal: irrelevant, benign-positive, or stressful.
Three types of stressful appraisal: harm/loss, threat, or challenge.
Harm/loss: injury or damage that has already occurred which can include death, bereavement, loss of self-esteem, and decreased physical function.
Threat: events yet to occur.
Challenge: opportunities for growth or mastery.
Psychological stress occurs when the demands or conflicts of a situation exceed the individual’s resources. Both internal (within the person) and external (those outside the person, such as time and money).
Primary appraisal determines the intensity and quality of emotional response to the event.
Benign-positive appraisals result in positive emotions: joy & contentment
Stressful appraisals produce negative emotions of anxiety, fear, and anger.
Cognitive appraisal is a reaction to psychological stress.
Secondary appraisal.
Person uses this to evaluate options and resources available in response to stressful situations.
Determines success or failure coping with the situation by influences the decisions made about what to do.
Reappraisal.
Caregiving Mastery.
Reappraisal: the ongoing, continual reinterpretation of feedback in the person-environment relationship that occurs over time and changing conditions
Allows for variations in the emotional response.
Caregiving Mastery: proposed by Lawton et al. (1989) as another form of reappraisal which is a positive view of a person’s ability to cope successfully with stress.

11. Smart Home “Wireless Caregiving” (Coughlin, 1999).
Allows communication and health monitoring from a distance, frees caregiver to partake in other activities.
Could prolong the ability of older adults to live at home and avoid institutionalization.
Includes the Personal Assistance Security System (PASS).
Personal assistance security systems can notify a caregiver if a fall has occurred.
The ability of the elder to notify the caregiver in times of distress can reduce worry and stress for both parties.
Personal assistance security system allows caregivers to monitor from a distance, allowing him/her the opportunity to partake in other activities while satisfying the needs of the care recipient (Alexy, 2000).
Computer and internet reduce social isolation, promote communication between
caregiver, care recipient.
Affordability, simplicity important in wireless caregiving
PASS and computer are external resources support caregiver mastery and reappraisal of the situation in a more positive manner.
- Reduces the risk for depression, burden, increases satisfaction by providing another resource.
- Respite, support groups not feasible for all CGs, new alternatives needed to address caregiving needs.
-Opens the door to providing new computer and wireless technologies as caregiver resources.
Many elders homebound, on fixed incomes.

12. Literature Review: Summary
Rationale for intervention based on the Stress-Appraisal-Coping model, caregiving, assistive technology, and home modification literature.
Based on the literature, it is predicted that:
Use of the PASS by frail elders will assist the caregiver in:
Feeling mastery or control over the situation.
Enhancing social support.

13. Research Questions
Will the treatment group (care recipients who have a PASS) maintain their status while the control group will decline?
Will users for caregiving purposes maintain their status level while nonusers will decline?
Will the combination of the PASS with benefit users the most?
Which segment of caregivers will benefit most?
What is the subjective evaluation of PASS and use for caregiving?

14. Methods: Study Design
The Smart Home: Technology and Aging Project at UB.
45 older adults living alone have had computers with Internet access and X10 Active Home installed and have had previous training.
Final portion of Smart Home: Installation of the X10 Powerhouse (PASS).
personal assistance security console along with the wireless call pendant.
X10 Active Home is a computer-based home control kit.
Consists of computer software program, lamp and wall switch modules, a door sensor, motion sensor light, remote control of 1 appliance, and a hand held remote.
Used together the PASC and call pendant will use the telephone line to dial the caregiver for assistance
A stored message will be played back in the care recipient’s voice: “This is Mrs. Smith at , I may have an emergency, please call me back.”
After the elder activates the call button, the console sounds an alarm to alert the user that the system is activated.
Console dials and plays message 3X for caregiver and will include a statement asking the CG to press 0 on their phone.
If CG presses 0, alarm stops and CG can listen in for 75 seconds, during which CR can speak into console.
If phone isn’t answered or answering machine comes on console will dial next of up to 4 phone numbers. This cycle continues for 4 minutes after which alarm stops and it stops dialing.
If person doesn’t press 0 or answer machine records message, next number called.
75 seconds after the listener presses 0, the alarm resumes and stops after 4 minutes unless you press STOP on the Call Pendant to stop the alarm and reset the Console.
Alarm stops after 4 minutes.

15. Methods: Research Design
Initial 6 Months 12 Months
TREATMENT
use O X O X O
Non use O X O X O
CONTROL
use O O O
Non use O O O
O = Questionnaire
X = PASS

16. Sampling Convenience sampling
Smart Home participants identified potential caregiver participants
Primary informal caregiver identified by SH elder.
Control group
Caregiver selected by SH participant as the person in the community responsible for the majority of their unpaid care or assistance.
ALL CAREGIVERS
Further divided into computer and non-computer users
Should be the person most likely to respond in the case of an emergency
Study investigator will contact 1st person on the list, if they decline, the person who provides next greatest level of care contacted next.
Continues until verbal interest obtained, at which time the voluntary informed consent will be mailed and one copy is returned to UB for one caregiver for each person in the intervention and control groups.

17. Study Sample Initial Agreed 6 Mo. 12 Mo. T C 45 37 35 31 67 24 22 19
Due to the small sample size at end N, I did not expect statistical significance because of decreased power.
112 potential caregivers to the Smart House (SH) participants
Intervention (n=45), Control (n=67)
Assignment of groups by communication between caregiver results in 4 possible groups
Intervention: 2 groups
using caregiver and care recipients
Non using caregiver and care recipients
Control: 2 groups

18. Caregiver Characteristics
Age: M = 56.8 (SD = 14.15)
Females: n = 37 (74%); Males: n = 3 (26 %)
Race: Minority, n = 10 (20%), Caucasian, n = 40 (80%)
Marital Status: Married, n = 26 (52%); Unmarried, n = 24 (48%)
Relationship to CR: Offspring, n = 20 (40%); Friend/neighbor, n = 30 (60%)
Homeownership: Yes, n = 38 (76%), No, n = 12 (24%)
Education: High School, n = 20 (40 %), Post secondary, n = 30 (60%)
Income: $0-$20K, n = 13 (26%), $20K +, n = 37, (74%)
Employed: Yes, n = 25 (50%), No, n = 25 (50%)

19. Care Recipient Characteristics
Age: M = 74.2 (SD = 7.43)
Females: n = 45 (90%); Males: n = 5 (10 %)
Race: Minority, n = 10 (20%), Caucasian, n = 40 (80%)
Homeownership: Yes, n = 30 (60%), No, n = 20 (40%)
Education: Primary and secondary, n = 18 (36 %), Post secondary, n = 32 (64%)
Income: $0-$20K, n = 28 (56%), $20K +, n = 22, (44%)

20. Study Sample: PASS and E-mail Group Assignments
All Participants
N = 50
PASS
n = 31
No PASS
n = 19
Assignment of groups by communication between caregiver results in 4 possible groups, however one group (no PASS, ) was dropped from the analysis due to extremely small sample size.
Intervention: 2 groups
using caregiver and care recipients
Non using caregiver and care recipients
Control: 2 groups
PASS and
n = 12
PASS, no
n = 19
No PASS,
n = 2
No PASS, no
n = 17

21. Intervention
Installation and training in the use of the PASS was provided to Smart House participants and caregivers.
Intervention group allowed to keep system at study’s conclusion.
Installation.
1 day installation, 3 1-hour training sessions or more as needed to care recipients and caregivers.
Ongoing technical support via principal investigator, project staff.

22. Psychosocial outcome measures
Zarit Burden Interview (ZBI).
29 item self-report inventory of burden.
Center for Epidemiological Studies Depression (CES-D) Inventory.
Measures depression experienced in the past week.
Picot Caregiver Rewards Scale.
Measures positive feelings and outcomes related to the caregiving experience.
Zarit
Zarit Burden Interview (ZBI).
29 item self-report inventory of burden associated with functional/behavioral impairment in the home environment.
Content areas: health, finances, social life, interpersonal relationships.
5-point Likert scale “never” to “nearly always.”
High internal consistency (Cronbach’s alpha=.91.
Test=retest reliability of .71 (Vitaliano, Young, & Russo, 1991).
Score ranges from 0 to 116.
CES-D
20 items.
ranging from 0 (rarely or never) to 3 (most or all the time).
Total score of 60, 16 the cutoff for depression with higher scores indicating greater depression experienced in past wk.
Internal consistency of Cronbach’s alpha=.86.
Acceptable test-retest reliability of .57 (Lee, Brennan, & Daly, 2000).
Used frequently with caregivers (Picot, Youngblut, & Zeller, 1997).
Picot Caregiver Rewards Scale.
24-item scale designed for adults caregivers.
Measures positive feelings and outcomes related to the caregiving experience.
5-point Likert scale of positive feelings related to caring.
0 (not at all) to 4 (a great deal).
Scores range from 0 to 96.
Higher scores indicate greater perceived rewards.
Internal consistency of Cronbach’s alpha=.83 and test-retest reliability reported as .75 by Picot, et al. (1997).

23. RESULTS
No statistical differences were noted between the treatment (n =31) and control (n = 19) caregiver groups at initial assessment
Care recipient age (Treatment, M = 72.10, SD = 6.00; Control, M = 77.74, SD = 8.34; t = 2.78, p = .008) and race (Treatment, Minority = 25%, Control, Minority = 5.3%; X2 = 3.554, p = .030) were significantly different.
Age Tx Control
Race Tx 8 minority, Control 1 minority

24. RQ1: Effect of PASS Intervention on Depression
Significant increase in caregiver depression in control group
This finding is not present after controlling for the age and race of the care recipients

25. RQ1: Effect of PASS Intervention on Caregiver Burden
A trend of decreased burden over time occurred in the treatment group, while increasing in the control group. This pattern was sustained after controlling for care recipient age and race.

26. RQ1: Effect of PASS Intervention on Caregiver Satisfaction
caregiver satisfaction over time in both PASS users and non-users decreased without statistical significance.

27. RQ2: Effect of E-mail on Depression
A significant increase in caregiver depression occurred in non users from 0 to 12 months, even after controlling for care recipient age and race

28. RQ2: E-mail on Caregiver Burden
using caregivers showed a trend towards decreased burden.
Non users showed a slight trend towards increased burden over time.

29. RQ2: E-mail on Caregiving Satisfaction
using caregivers had a decline in caregiving satisfaction. After removing the influence of care recipient age and race from 0 to 12 months, it became significant.
Non users had a significant decrease in satisfaction from 0 to 12 months, even after controlling for care recipient race and age.
Therefore, use in caregiving has nothing to do with satisfaction.

30. Research Question 3
Will the combination of the PASS with use benefit caregivers the most?

31. RQ3: Effect of PASS and E-mail on Depression
Caregivers who used neither PASS or had a significant increase in depression from 0 to 12 months, and had the worst outcome.

32. RQ3: Effect of PASS and E-mail on Caregiver Burden
The trend towards decreased burden was greatest among caregivers who used both PASS and
Caregivers who used PASS alone had a very small decrease in burden
Caregivers who used neither PASS or had a trend towards increased depression and had the worst outcome.

33. RQ3:Effect of PASS and E-mail on Caregiver Satisfaction
In both PASS and users and non users caregiving satisfaction declined. Conclusion: Technology had nothing to do with their satisfaction.

34. RQ4: Which segment of caregivers will benefit most?
Depression
Non users increased in depression.
Caregivers who did not use the PASS or had the worst outcome.
Burden
Caucasian caregivers who provided fewer than 3 hours of care per week who used had a decrease in burden.
Burden declined even further in those individuals who were employed out of this group
Caregiving Satisfaction
Results showed that the PASS made a difference in caregiving satisfaction for Caucasian participants.
The use of PASS could maintain these users caregiving satisfaction.

35. RQ5: Caregiver and Care Recipient Subjective Evaluation
Caregivers
100% of the caregivers (n = 31) evaluated the PASS positively.
94% (n =47) reported they would worry less about the care recipient’s living alone following installation of the PASS
Positive responses re: from 100% of users (n = 14). Used most frequently to keep in touch (pictures, humorous items).
Care recipients
83.9% (n = 26) reported feeling safer in the home after installation of the PASS.
82.4% (n = 25) reported that is very important in their lives .

36. Discussion: Effectiveness
The combination of PASS and use is the most effective way to prevent a significant increase in caregiver depression and burden.
Technology interventions (PASS and ) appear to have no impact on caregiving satisfaction.

37. Discussion: Minority Caregivers
Caregiving satisfaction declined among all participants, especially among minority caregivers.
The decrease in burden among minority caregivers is significantly different from Caucasians.
The technology did not have an impact on these participants.
There appears to be another factor(s) affecting this group.

38. Discussion: Targeting the Intervention
The benefits of the PASS can be maximized by targeting specific caregivers. Two specific segments were identified:
Caregivers with an income of at least 20K, healthy, and employed.
Caregivers who are Caucasian, provide care less than 3 hours, and not employed, but would like to spend more time helping the care recipient.
The benefits of is maximized by targeting specific caregivers.
Income of at least 20K.
Caregivers who are Caucasian, and provide care less than 3 hours.

39. Clinical Implications
Practical and low cost technology, such as and PASS has a positive impact for certain caregivers. Use of these technologies should be encouraged to enhance the well-being of caregivers.
Technology interventions combined with counseling appear to be especially effective in reducing caregiver depression (Eisdorfer, et al., 2003)
Contributions
This study reinforces findings in previous literature that and the Internet are important sources of support for the caregiving relationship.
First study focusing on the impact of the Smart Home on caregivers of persons without cognitive impairment.
Limitations
Small sample size, difficult to generalize.
The use of was not objectively collected for this study, relied on self-report.
PASS console somewhat complicated for older adults to program .