Caregivers and Health care : For Better or Worse

1. Caregivers and Health care: For Better or Worse Howard Gruetzner, M.Ed., LPC Education and Family Care Specialist North Central Texas Chapter, Waco Regional Office Alzheimer’s Association Author: Alzheimer’s: A Caregiver’s Guide and Sourcebook, 3rd Rev., 2001, John Wiley and Sons, NY

2. Objectives • Recognize immediate and insidious threats to caregiver health • Identify health system barriers to family caregiver heath in dementia care • Identify lifestyle and coping changes to support caregiver’s future health • Recommendations for changes in medical responses to persons with dementia and caregivers

3. 2012 Alzheimer’s Disease Facts and Figures • Most people with Alzheimer’s have one or more other serious medical conditions. Dementia complicates management of these conditions. • In 2009, 30 percent of Medicare beneficiaries age 65 and older with dementia also had coronary heart disease, 29 percent also had diabetes, 22 percent also had congestive heart failure, 17 percent also had chronic kidney disease and 17 percent also had chronic obstructive pulmonary disease.

4. Challenges to Health & Care • Many spousal caregivers are older themselves and have acquired chronic health problems- some of which chronic stress will affect negatively, e.g., heart disease, diabetes, hypertension. • Lifestyle changes triggered by ongoing and more intensive caregiving have further potential to create negative mental and physical health outcomes • Due to the physical and emotional toll of caregiving on their own health, Alzheimer’s and dementia caregivers had $8.7 billion in additional health care costs in 2011. (2012 Alzheimer’s Disease Facts and Figures)

5. Greatest Difficulty Faced by Caregiver Due to Role • Creates stress...............................................48% • Not enough time for himself/herself ..........18% • Affects family relationships ........................15% • Not enough time for family...........................14% • Financial burden ...........................................13% • Interferes with work.......................................11% • Creates or aggravates health problems*.......5% *At what stage of caregiving is this noted as caregiver problem? Or does this suggest what priority health has before it is really a problem. From Alzheimer’s Association “2009 Alzheimer’s Disease Facts and Figures” (Caregiver Could Name up to 2 Areas.)

6. Proportion of Alzheimer’s and Dementia Caregivers Who Report High or Very High Emotional and Physical Stress Due to Caregiving* • Emotional Stress of Caregiving • High or Very High………………………..61% • Not High to Somewhat High…………..39% • Physical Stress of Caregiving • High to Very High…………………………43% • Not High to Somewhat High…………...57% • 1/3 report depression *2013 Alzheimer’s Disease Facts and Figures-AlzAssoc

7. The Strawberry or the Tiger A person traveling across a field encountered a tiger. She fled, the tiger after her. Coming to a precipice she caught hold of the root of a vine and swung herself down over the edge. From above the tiger sniffed. Today’s meal is ready and waiting.

8. The Strawberry or the Tiger Trembling, the woman looked down to where, far below, another tiger was waiting to eat her. Only the vine sustained her. But tigers were not the only problem she had to consider.

9. The Strawberry or the Tiger Two mice, one white and one black, little by little, started to gnaw away the vine. With disbelief the woman looked out into the wilderness that surrounded her and saw a lush strawberry that might be just within her reach.

10. The Strawberry or the Tiger Grasping the vine with one hand, she stretched as far as she could and plucked that strawberry with the other. How sweet it tasted! ….from Reps and Senzaki, Zen Flesh Zen Bones

11. Stress-Driven Model ALL THINGS MAY BE ENDURABLE IF THE DEMANDS ARE FINITE IN DEPTH AND TIME. BUT A FUTURE THAT OFFERS NO EXIT AT ALL, EVEN IF THE BURDEN ON A DAILY BASIS IS NOT UTTERLY OVERWHELMING, CAN BE AN OBVIOUS SOURCE OF SADNESS AND DEPRESSION…NO BURDEN CAN BE GREATER THAN TRYING TO IMAGINE HOW ONE CAN COPE WITH A FUTURE THAT PROMISES NO RELIEF. ------ CALLAHAN, 1988

12. Health-Driven Model It’s a general moral principle that the more power you have over someone, the greater your duty is to use that power benevolently. Who is the one person in the world you have the greatest power over? It’s your future self. You hold that life in your hands, and what it will be depends on how you care for it. --------Hanson and Mendius, 2009 The Practical Neuroscience of Buddha’s Brain: Happiness, Love and Wisdom

13. Threats to Caregiver Health • Too much ambiguity about what is or might be happening- thus, not having rationale or direction or basis for planning for the future • Lack of Diagnosis or Diagnostic clarity • Increasing social, psychological and physical demands and losses • Role engulfment and caregiver vigilance • Social and Psychological isolation • Lack of reasonable resources or access to those that exist

14. Threats to Caregiver Health • Inattention to own health until own health crisis • Lack of focus on new question, “How Can I Take Care of Both of Us” • Lack of preventive health care practices or contact

15. Known Caregiver Health Risks • 40 to 60% of family caregivers develop clinical depression which requires medical treatment • Many may have had depressive symptoms but never clinical depression • Chronic stress threatens body’s immune system which increases risk for type II diabetes, heart disease and hypertension • Two studies from major research universities found that 40% and 60% of spousal caregivers died before person with AD

16. Prescriptions for Caregiver Health • Proactive plan for maintaining or enhancing health- holistic view • Use physician to anticipate health challenges driven by stress and unhealthy lifestyle and affects on present conditions and vulnerabilities for post caregiving status • Lifestyle purposely involves healthy diet, exercise, mental breaks, rest, social engagement and resistance to disconnecting from roles, relationships and activities that provide meaning and sources of identity and connection with community

17. Stress and Chronic Stress • Stress- any emotional, physical, social, economic, or other factor that requires a response or change • Chronic stress- results from stressors that continue indefinitely, those that reoccur, or in situations with new stressors developing continually • Poorly managed chronic stress that occurs with high intensity and for an extended period of time can cause pathological changes

18. Basic Approaches to Coping • Change the stressor • View stressor differently • Understand stressor differently • Change feelings about stressor

19. Types of Coping • Problem-focused- doing something that changes the situation or event that is stressful • Emotion-focused- things we do to deal with, control or change feelings • Cognitive-focused- changing the meaning of what happens, the way we see it, reframing the problem • Spiritual-focused- find meaning in suffering • Relationship-focused- enhances relationship

20. Strengthen Coping Skills • Caregivers will need to learn about the dementia symptoms and diseases causing them • Caregivers will need to understand how disease progression continues to change what it is possible for loved ones to do, thus, requiring more involvement from caregivers and family • Need to learn skills to break the chains of caregiver vigilance which engulf their lives • Utilize evidenced-based programs like REACH and StressBusters • Develop partnership with treating physician

21. Considerations for Health Care • Persons w/dementia may resist health care • People with serious medical conditions and Alzheimer’s or other dementia are more likely to be hospitalized… • To stay in the hospital longer than people with the same serious medical conditions but no Alzheimer’s or other dementia. • Caregivers/family usually assume more caregiving responsibilities at the hospital • In our current medical system physicians treat individual patients so caregiver health needs must be met separately

22. Physician Considerations • Time limitations & difficulties in history taking • Who is the patient? • Greater uncertainty in diagnosis and tx • Impaired treatment adherence • Treatment of co-morbid conditions more difficult • Shifts in focus from “curing” to “caring” • In relationship witnesses loss of personhood • Involvement with others in decision-making • Increasing possibility ethical dilemmas and conflict • Chronic grieving in witnessing personality changes

23. Barriers in Health Care • Persons suspected of having dementia are seen by primary care physicians • Who have different views and backgrounds about syndrome • Who tend to focus on needs of care recipient alone • Who may only question and assess identified patient • Time limited to use relationship strengths in assessment • May do workup to rule out other causes but shortcut assessment instruments • Limited biological makers for diagnostic workup • Have different perspectives from caregivers on what is needed • Caregivers want concrete, practical advice from physicians and referrals or information on how to access community agencies • Physicians are often frustrated with the expectations of families, the inadequacy of what the medical system has to offer patients, and their ability to manage dementia patients

24. Barriers in Health Care • Uncomfortable giving advice about behavioral symptoms, perhaps reflecting the physician’s lack of information on how to manage dementia or lack of information about community resources • With multiple medical problems to treat, physicians are less likely to spend time on cognitive problems, especially those that appear to be ‘‘untreatable’’ lack of reimbursement for family counseling • Tendency to under-diagnosis dementia and pathology causing it or diagnosis late in disease progression • Majority of dementia cases never diagnosed or in record

25. Recommendations • Focus on relationship with person with dementia before assessment or discussion of difficulties • Collaborative care orientations involving education and caregiver support and community referrals • More dementia-related training for detection, diagnosis, and management of BPSD • Primary care providers need to expand their definition of “patient” to include not only the individual with dementia but the caregiver as well. • Direct caregiver to health care and stress-reduction resources • Provide more support and management options to families for Behavioral and Psychiatric Symptoms of Dementia (BPSD)

26. Recommendations • Utilize another staff position to address needs of caregiver- use of Nurse Practioner or Physician Assistant show potential in helping caregivers reduce the impact and frequency of BPSD • Develop care oriented roles with family members involved in care of person with symptoms suggesting dementia • Screening for Mild Cognitive Impairment/Dementia • Development and evaluation of more integrated models of community-based dementia care, with the Primary Care Physician being at the center of such initiatives

27. Helpful Services for Caregivers • Information about local programs.............38% • Money to pay for additional resources…..30% • Respite care (breaks from caregiving)......25% • Family consultation/counseling.................22% • Education......................................................19% • Other................................................................7% Alzheimer’s Association and Area Agencies on Aging are good sources of these. The most effective interventions involve and positively affect the needs of persons with dementia and caregivers.

28. Stress, Grief, And Sorrow I saw grief drinking a cup of sorrow And called out, “it tastes sweet, does it not?” “You’ve caught me, “ grief answered, and ruined my business. How can I sell sorrow, when you know it’s a blessing?” ---- Rumi Birdsong: 53 Short Poems

29. References and Resources http://www.dshs.state.tx.us/alzheimers/Alzheimer-s-Disease--Clinical-Best-Practices.doc • BalochS, Moss SB, Nair R, et al. Practice patterns in the evaluation and management of dementia by primary care residents, primary care physicians, and geriatricians. Proc (BaylUniv Med Cent). 2010;23(2):121–25 • Bradford A, Kunik ME, Schulz P, et al. Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors. Alzheimer Dis AssocDisord. 2009;23(4):306–14. • Boise L. Improving dementia care through physician education: some challenges. ClinGerontol. 2006;29(2):3–10. • Callahan CM, Boustani M, Sachs GA, et al. Integrating care for older adults with cognitive impairment. Curr AlzheimerRes. 2009;6(4):368–74. • Connolly A, Gaehl E, Martin H, et al. Underdiagnosis of dementia in primary care: variations in the observed prevalence and comparisons to the expected prevalence. Aging MentHealth. 2011;15(8):978–84. • Iliffe S, Jain P, Wong G, et al. Dementia diagnosis in primary care: thinking outside the educational box. Aging Health. 2009;5(1):51–59 • Perry M, Draskovic I, van Achterberg T, et al. Development and validation of quality indicators for dementia diagnosis and management in a primary care setting. J Am Geriatr Soc. 2010;58(3):557–63

30. References and Resources • Iliffe S, Jain P, Wong G, et al. Dementia diagnosis in primary care: thinking outside the educational box. Aging Health. 2009;5(1):51–59 • FaranakAminzadeh, RN, M.S.N, GNC , et al, A Review of Barriers and Enablers to Diagnosis and Management of Persons with Dementia in Primary Care,CANADIAN GERIATRICS JOURNAL, VOLUME 15, ISSUE 3, SEPTEMBER 2012 • Wendy L. Adams, PhD, et al. Physicians’ Perspectives On Caring for Cognitively Impaired Elderly, The Gerontologist, 2005, Vol. 45, No. 2, 231–239.