The Effect of Home Monitoring Technology on Reducing Burden in Caregivers of Older Adults with Disabilities

1. 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.

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).

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.

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 • 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

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.

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.

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.

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.

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 e-mail users for caregiving purposes maintain their status level while e-mail nonusers will decline? • Will the combination of the PASS with e-mail benefit users the most? • Which segment of caregivers will benefit most? • What is the subjective evaluation of PASS and e-mail 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.

15. Methods: Research Design Initial 6 Months 12 Months TREATMENT E-mail use O X O X O Non e-mail use O X O X O CONTROL E-mail use O O O Non e-mail 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.

17. Study Sample Initial Agreed 6 Mo. 12 Mo. T C 45 37 35 31 67 24 22 19

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 PASS and e-mail n = 12 PASS, no e-mail n = 19 No PASS, e-mail n = 2 No PASS, no e-mail 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.

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.

24. RQ1: Effect of PASS Intervention on Depression

25. RQ1: Effect of PASS Intervention on Caregiver Burden

26. RQ1: Effect of PASS Intervention on Caregiver Satisfaction

27. RQ2: Effect of E-mail on Depression

28. RQ2: E-mail on Caregiver Burden

29. RQ2: E-mail on Caregiving Satisfaction

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

31. RQ3: Effect of PASS and E-mail on Depression

32. RQ3: Effect of PASS and E-mail on Caregiver Burden

33. RQ3:Effect of PASS and E-mail on Caregiver Satisfaction

34. RQ4: Which segment of caregivers will benefit most? • Depression • Non e-mail users increased in depression. • Caregivers who did not use the PASS or e-mail had the worst outcome. • Burden • Caucasian caregivers who provided fewer than 3 hours of care per week who used e-mail 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: e-mail 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 e-mail is very important in their lives .

36. Discussion: Effectiveness • The combination of PASS and e-mail use is the most effective way to prevent a significant increase in caregiver depression and burden. • Technology interventions (PASS and e-mail) 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 e-mail 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 e-mail 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)