Approaching caregivers of Dementia patients

1. Approaching caregivers of Dementia patients Sofia Georgiadou, Ph.D., LPC Houston Area Community Services

2. Learning Objectives • Participants will learn how to assess for signs and symptoms of an overburdened caregiver • Participants will become more familiar with the family system dynamics in caregiver-dementia patient dyads. • Participants will learn how they can approach caregivers as healthcare providers to address issueslike: • the caregivers’ responsibilities and limitations • their relationship with the care receiver • how to handle the demands of care giving more effectively

3. Exploring burdens of caregiving • Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. • 5 burdens of family caregiving • time and logistics • physical tasks • financial costs • emotional burdens and mental health risks • physical health risks

4. Signs of burn-out • Every behavior communicates a message. Often, caregivers report: • Missing physician appointments • Ignoring their own health problems • Not eating a healthy diet for lack of time/ overeating • Overusing tobacco and alcohol when they are stressed • Giving up exercise habits for lack of time • Sleeping problems • Weakened connections with friends for lack of time to socialize • Holding in feelings of anger and frustration and then being surprised by outbursts directed at the care recipient, other family members, co-workers and strangers

5. Signs of burn-out cont. • Other signs to look for include: • Feeling sad, down, depressed or hopeless • Loss of energy • Lack of interest in things that used to give them pleasure • Resenting the older adult in their care • Feeling that people ask more of them than they should • Feeling like caregiving has negatively affected family relationships • Feeling irritated by other family members who don't help and criticize their care • Feeling upset by arguments with others about their situation

6. Focusing on the person rather than the disease • “Behavioral symptoms” of dementia are often a way of communicating unmet needs. • What are the particular needs of each family patient? They might differ given the caregiver’s gender and other demographics. • Example: caregivers for cognitively demented patients might benefit more from emotional support while caregivers for demented AND frail patients might be concerned with knowledge of nursing skills.

7. Exploring emotional aspects of caregiving role • Process caregivers’ feelings about becoming a caregiver and meanings they attach to that role: • Taking responsibility (faithfulness; paying back) generally perceived as rewarding • In some cases it can be more of a matter of duty with elements of guilt and obligation. • Isolation due to distorted or no communication with a spouse or parent who is no longer able to communicate • Having no other relatives left in life/ the role-reversal (i.e., to parent your own parent). • Grief in anticipation of loss of care recipient

8. Exploring existential aspects of caregiving role • Reframing can play a more important role than problem-solving or seeking social support. • How has this process changed the caregiver’s philosophy of life? What good can they make out of it? • Increased awareness of the shortness of life, which may make them live more intensely in the present. • Identify meaning in the past (memories), present (daily routines, positive aspects of responsibility) and future (to pass on the patient's lifework).

9. Behavioral Management • Family caregivers need more intensive interventions that include skills training and assistance with problem solving. • Caregivers who are firm and directive tend to have less depression. • Encourage the caregiver to engage the family member in activities. For example, the caregiver can be asked, “Does your husband help with household tasks?” In this case, the caregiver should be encouraged to involve her husband in simple tasks such as folding the laundry.

10. Family Dynamics • Family issues often surface when discussing the specifics of respite care. • The primary caregiver may have difficulty accepting other family members' support while at the same time resenting a perceived lack of support. • Feelings towards care recipient fluctuate over the course of care.

11. Tackling Stress • “As a caregiver, what are your strategies for stress relief?” • If the caregiver cannot readily provide an answer to this question, this is an area of concern. • Coping strategies: • emotion-focused: worrying and self-accusation • problem-focused: confronting issues and seeking information • Caregivers who use problem-focused strategies have less burnout. • “When something goes wrong with your brother's care, for instance, if he loses control of his bladder, how would you react?” Emotion-focused responses are “I'd cry” or “I'd put him in a home.” A problem-focused response is, “I'd call the doctor and find out what's happening.” • A tendency to use emotion-focused responses should alert the healthcare provider to an increased risk of burnout in the caregiver.

12. Supporting caregivers • Disclosing diagnoses – Discussing preferences of disclosure with patients and caregivers • Caregivers, the “hidden patients” • Counseling – Family meetings with caregivers • Education about disease • Support groups for caregivers • Addressing inflexibility and resistance to change in the family system • Helping caregivers acknowledge their limits

13. Support Groups for caregivers • For many caregivers, much of their burden is related to feelings of loneliness or isolation. • Specific groups, such as the Breakaway program, are designed to supplement traditional support groups by providing informal recreational and social activities with a peer group of caregivers who are experiencing similar stresses. • Adult day services are an excellent source of respite for the caregiver and provide engaging activities for persons with dementia. The local Area Agency on Aging can provide the caregiver with a list of nearby facilities.

14. Transition to bereavement • Caregivers who feel more burdened in the caregiving role tend to have more difficulty with the bereavement process. • After identifying caregivers with higher levels of burden, healthcare providers should help prepare these patients for the emotional challenges ahead.

15. Discussing hospice • In discussing hospice with AD caregivers, clinicians may want to emphasize selected features of hospice that are particularly important to caregivers: • continued follow-up evaluation by the patient's primary care provider • hospice's emphasis on helping patients to avoid hospital admission.

16. 5 areas of opportunity • Promoting excellent communication with family • Encouraging appropriate advance care planning and decision making • Supporting home care • Demonstrating empathy for family emotions and relationships • Attending to family grief and bereavement.

17. Final Thoughts • Dementia is not a one-person problem; It’s systemic family Issue • Victims, troopers, helpers, or supermen/women? What language do we as healthcare providers use to describe the situation of a dementia patient caregiver? • Who is the caregiver of the caregiver?“ Put the oxygen mask on yourself first” • Empowering the caregiver – Acknowledging their ability to carry on so many responsibilities (“sandwiched” younger generation of caregivers) • Addressing the limits of caregivers – Explain signs of burn-out to them so they know when to ask for help and why realistically they can’t do everything on their own • Keeping in mind the resistance of the family system to reorganize itself and change

18. Closing Comments • In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater meaning in their own work. • Thoughts? • Questions?

19. Resources about Caregiving • Alzheimer's Association : http://www.alz.org • Telephone: 800-272-3900 • Alzheimer's Disease Education and Referral Center, National Institute on Aging (This Web site includes information about ongoing studies.)http://www.alzheimers.org • National Information Center of the U.S. Administration on Aging • Telephone: 202-619-7501 • Administration on Aging: http://www.aoa.dhhs.gov • American Association of Retired Persons; a free caregiver resource kit is available (No. D15267) • Telephone: 800-424-3410 • National Counsel on the Aging • Telephone: 202-479-1200 • Children of Aging Parents: http://www.careguide.cgi/caps/capshome.htm • Telephone: 800-227-7294 • Telephone: 215-945-6900

20. Resources about Caregiving • National Family Caregivers Association: http://www.nfcacares.org • Telephone: 800-896-3650 • The Well Spouse Foundation: http://www.wellspouse.org • Telephone: 800-838-0879 • Telephone: 202-685-8815 • National Hotline for Physician Reporting of Elder Abuse and Neglect • Telephone: 800-490-8505 • Eldercare Locator (A nationwide service for locating area agencies on aging) • Telephone: 800-677-1116 • Caregiving Online (Online support service through a caregiving newsletter) • Web address: http://www.caregiving.com • CareGuide.com (A personal caregiving resource) • Web address: http://www.careguide.net • Caregiverzone.com (A web site for family persons) • Web address: http://www.caregiverzone.com

21. Bibliography • Albinsson, L. & Strang, P. (2003, April). Existential concerns of families of late-stage dementia patients: Questions of freedom, choices, Isolation, death, and meaning. Journal of Palliative Medicine, 6(2): 225-235. doi:10.1089/109662103764978470. • Casarett, D., Takesaka, J., Karlawish, J., Hirschman, K., & Clark, C. (2002, April-June). How should clinicians discuss hospice for patients with dementia? Anticipating caregivers’ preconceptions and meeting their Information needs. Alzheimer Disease & Associated Disorders, 16(2), 116-122. • Fiori, D. E. (2002). Clinical Update: Caring for the Elderly. Family Therapy magazine, 1(4), 36-42. • Forde  O.T. &Pearlman  S. (1999). Breakaway: A social supplement to caregivers' support groups.  American Journal of Alzheimer Disease, 14, 120–124. • Houlihan, J. P. (1987). Families caring for frail and demented elderly: A review of selected findings. Family Systems Medicine, 5(3), 1987, 344-356. doi: 10.1037/h0089730 • Lawton  M.P., Brody  E.M., & Saperstein  A.R. (1989).  A controlled study of respite service for caregivers of Alzheimer's patients.  Gerontologist, 29(8), 16-26.

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