How to determine caregiver stress

Todays post is part of our ongoing series, The Encompass Way. Here, we’ll go over many of the steps involved in setting up a comprehensive care plan, which helps us to provide seniors and their families a complete understanding of the available care options and helps them maneuver through the challenges of the system.

home care omaha dementiaThe following Burden Interview has been specially designed to reflect the stresses experienced by caregivers of dementia patients. It can be completed by caregivers themselves or as part of an interview. Caregivers are asked to respond to a series of 22 questions about the impact of the patient’s disabilities on their life. For each item, caregivers are to indicate how often they felt that way (never, rarely, sometimes, quite frequently or nearly always).

Scoring the test

The Burden Interview is scored by adding the numbered responses of the individual items. Higher scores indicate greater caregiver distress. The Burden Interview, however, should not be taken as the only indicator of the caregiver’s emotional state. Clinical observations and other instruments, such as measures of depression, should be used to supplement this measure.

Norms for the Burden Interview have not been computed, but estimates of the degree of burden can be made from preliminary findings. These are:

  • 0-20 — Little or no burden
  • 21-40 — Mid to moderate burden
  • 41-60 — Moderate to severe burden
  • 61-80 — Severe burden

Instructions

The following is a list of statements which reflect how people sometimes feel when taking care of another person. After each statement, indicate how often you feel that way and score accordingly: never (0), rarely (1), sometimes (2), quite frequently (3) or nearly always (4). There are no right or wrong answers.

1. Do you feel that your relative asks for more help than he or she needs?

2. Do you feel that, because of the time you spend with your relative, you don’t have enough time for yourself?

3. Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?

4. Do you feel embarrassed about your relative’s behavior?

5. Do you feel angry when you are around your relative?

6. Do you feel that your relative currently affects your relationship with other family members?

7. Are you afraid about what the future holds for your relative?

8. Do you feel that your relative is dependent upon you?

9. Do you feel strained when you are around your relative?

10. Do you feel that your health has suffered because of your involvement with your relative?

11. Do you feel that you don’t have as much privacy as you would like because of your relative?

12. Do you feel that your social life has suffered because you are caring for your relative?

13. Do you feel uncomfortable having your friends over because of your relative?

14. Do you feel your relative expects you to take care of him or her as if you were the only person he or she could depend on?

15. Do you feel that you don’t have enough money to take care of your relative in addition to the rest of your expenses?

16. Do you feel that you will be unable to take care of your relative much longer?

17. Do you feel that you have lost control of your life since your relative’s death?

18. Do you wish that you could just leave the care of your relative to someone else?

19. Do you feel uncertain about what to do about your relative?

20. Do you feel that you should be doing more for your relative?

21. Do you feel that you could do a better job in caring for your relative?

22. Overall, how burdened do you feel in caring for your relative?

Sources consulted:

  • Brown, JL, Potter JF, Foster BG. Caregiver burden should be evaluated during geriatric assessment. J Am Geriatr Soc. 1990; 38 (4): 455-460.
  • Cummings JL, Frank JC, Cherry D et al. Guidelines for managing Alzheimer’s disease: part I. Assessment. Am Fam Physician. 2002; 65 (11): 2263-2272.
  • Council on Scientific Affairs, American Medical Association. Physicians and family caregivers: a model for partnership. Council report. JAMA. 1993; 269 (10): 1282-1284.
  • Rankin ED, Haut MW, Keefover RW, Franzen MD. The establishment of clinical cutoffs in measuring caregiver burden in dementia. Gerontologist. 1994; 34 (6): 828-832.
  • Zarit SH, Reever KE, Back-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980; 20 (6): 649-655.

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