Who Cares: Dementia , Family Caregivers and the Reitman Centre Model

1. Who Cares:Dementia, Family Caregivers and the Reitman Centre Model J Sadavoy 2014

2. Outline • Caregivers: Background • Assessing family caregivers • Intervention models for family caregivers: the Reitman Centre J Sadavoy 2014

3. Defining Caregivers Not as obvious as it may seem J Sadavoy 2014

4. Professionals often “address” the needs of caregivers from their own perspective, leading to mismatch between interventions for caregivers and their needs. J Sadavoy 2016

5. The diagnosis opens a world of tasks and decisionsMr Taylor’s To Do List (NY Times May 1 2016) • When and What to tell the kids and grand kids • How long to keep their home (and cottage) • What’s coming- Needs over time • Revise will (protect assets for children) • End of Life decisions- DNR, what treatment to allow? • Home Care Alz Assistance • Where are Alz units (LTC) Joel Sadavoy May 10 2016

6. The Family Caregiver’s Perspective 3 Stages of Caring for someone with Dementia J Sadavoy 2014

7. Stage 1- Adjusted Coping • Diagnosis new- uncertain future; adjusting to new information and future. • Relationship – mild changes- core remains eg intimacy caring; irritation (doing it on purpose); confused • Communication – relatively intact • Independent activity (leaving him alone able to go out) • Safety concerns – no major concerns • Daily activities need little support or supervision • Coping is adequate • Little need for additional help • Few help seeking behavioursand little need for system navigation J Sadavoy 2014

8. Stage 2 – marginal coping “The silence was the worst. Silence not as in solitude or concentration but as in living with, eating with, waking up beside someone who has nothing to say to you.”RachelHadad: Strange relationship: a memoir of Marriage Dementia and Poetry” Diagnosis and its meaning on life now clear- no uncertainty other than how long will this go on. Relationship is significantly impaired Communication intermittent often absent- “I forget what love is like” Increasing responsibilities for all duties at home- finances, shopping, medical decisions, diet, housing, travel etc Dependency: Supervision of many adl’s, trapped at home- “I cannot plan without him” Social isolation –actual/perceived Additional help essential Help seeking behaviours and need for system navigation J Sadavoy 2014

9. Stage 3- Overwhelmed coping - Terminal caregiving Diagnosis –increased concerns about concurrent problems eg weight loss frailty Relationship very poor and intense feeling of isolation and loss Communication infrequent and largely absent. All decisions activities and responsibilities are caregivers; no participation from CR Overwhelmed and no longer able to cope- fantasies of death of CR as a release Independence gone: Cannot leave at all unless fully replaced Entrapment induces hopelessness Helpseeking focused on placement decisions Concern for welfare of caregiver by professionals J Sadavoy 2014

10. Family members identify as spouses or as children not as caregivers This is more than semantics. It define the range of needs and the reasons for caregiver burden J Sadavoy 2014

11. What is a caregiver? Snapshots of Barbara the wife of Robert • Barbara: 7 years of Posterior cortical atrophy- A student of dementia • A system navigator- MDs, speech exercise, nurses. • An administrator- a small business of caring at home • Separation –apart in their own home • Isolated from others- Internal. • Constant awareness of grief- sad, reactivation of ealry losses • Life and death decisions- the morphine story • Trapped – no end; grandchildren don’t know me • Loss of identity- “the wind beneath my wings” J Sadavoy 2014

12. Physical & psychological risks of caregiving Higher prevalence of physical symptoms than non carers - exacerbation of pre-existing illness (diabetes, hypertension) - more doctor visits Higher rates of prescription drug use* Higher rates of depression (14 – 47%) Estimated 7–31% take psychotropic drugs relapse of pre-existing psychiatric illness Substance use Emotional costs: anxiety, grief, guilt, rage** *Baumgarten et al, 1992; Hooker, 1992; Katon et al, 1982; Pruchno 1989; Schulz 1995; Kiecolt-Glaser 1987; Vitaliano et al 2003; Lee et al 2003 **Akkerman & Ostwald 2004; Alspaugh et al1999; Baumgarten et al, 1992: Brown et al, 1990; Burns & Rabins, 2000; Coon et al, 2003; Dura et al, 1991; Schulz et al, 1995; Saad et al, 1995

13. We endeavor to uncover and understand emotions Emotions are a rate limiting step in capacity to carry on as a caregiver J Sadavoy 2014

14. “I’m exhausted- not physically, but emotionally” (Barbara) Adaptational Challenges • Adapting to impaired partner – “undoing the relationship”; role reversal; solo decisions; lost confidant; lost companionship, • Intense emotions: Guilt, anger, frustration, Anxiety, Depression, Shame. • Isolation – social and family • Unwelcome New self perception: altered/uncertain future; trapped forever; bewildered; Outcome • Emotionally overwhelmed • Denial of disease • Undue personal expectations • Feeling out of control • Withdrawal and avoidance • Paralyzed: can’t give up or plan for future J Sadavoy 2014

15. Philosophy Diagnosis and treatment of dementia involves both the person with dementia and the caregiver(Sadavoy & Wesson 2012) Care of caregivers is an essential component of effective dementia care Tailored to target the specific, unique needs of each individual caregiver Reitman Centre CARERS Program J Sadavoy & V Wesson 2015

17. Reitman Centre Caregiver Assessment Checklist • Does CG feel that Diagnosis been clearly established and conveyed • Does CG accept/understand diagnosis • Does CG truly accept BPSD as involuntary (continue to blame CR) • What is CG’s level of knowledge about the disease • Does CG have realistic strategies/skills for dealing with BPSD • Does CG know how to access and use Professionals appropriately • What are CG’s beliefs (Cultural or other) about accepting help • What is CGs level of emotional resilience or vulnerability • What is the history of the relationship- CG’s motivation_love vs duty vs resignation • Oes the CG perceieve they have adequate social support • Does CG accurately appraise their own physical condition?

18. What Helps? Evidence-based interventions J Sadavoy 2014

19. The Cyril and Dorothy Joel and Jill Reitman Centre for Alzheimer’s Support and Training at Mount Sinai Hospital A comprehensive response to needs of carers J Sadavoy 2014

20. Principles of Effective models of Intervention for CGs J Sadavoy 2014

21. Other Principles Guiding RC Interventions • Require active participation of caregivers • Include education, support and respite • Promote knowledge transfer, skill building and competency • Take place in both group and individual settings • Incorporate principles of CBT (Pinquart & Sorensen, 2006; Schoenmakers et al, 2010; Sorensen et al, 2002; Cooper et al, 2007) J Sadavoy & V Wesson 2015

22. Reitman Centre evidence-based clinical goals for CGsare grounded in the known determinants of CG Burden Enhance knowledge Improve coping/problem solving Improve emotional regulation Reduce depression and anxiety Enhance sense of mastery and self efficacy Improve relationship and social interaction Reduce sense of isolation Ensure adequate professional support (Acton et al 2001; Brodaty et al 2003; Burns et al 2001: Gitlin et al 2003; Kneebone et al 2003; Pusey et al 2000; Schultz et al 2002; Smits 2007; Van den Wijngaart 2007)

23. Professional SupportA Husband’s Letter to a RC Clinician • “I am  writing you sincerely (cannot find the right word that really says thank you) for your support and help with B. Your assistance with the complexity of navigating the health system, Mt. Sinai and generally  the advice you have given me has been invaluable when I needed to make tough decisions. In reality it is just the knowledge of being able to write you at any time for advice has allowed  me to follow my head and heart knowing I have you as back up in this journey. • I would not be able support her if I did not know that I can talk and email you any time in the process of her disease. THANK YOU two small words that I am trying to convey the heartfelt feelings of thanks to you. Sincerely K.” J Sadavoy 2014

24. Coaching Advocacy Respite Education Relationship Simulation The Reitman Centre CARERS Group Program J Sadavoy & V Wesson 2015

25. The Reitman Centre CARERS ProgramCoaching, Advocacy, Respite, Education, Relationship, Simulation An innovative therapeutic group intervention providing education, support and skills buildingthat is unique to individual carers who provide care to family members with dementia.

26. Foundational Principles

27. Goals of the RCCP • Enhanced sense of mastery/self-efficacy • Enhanced practical skills • Improved relationship interactions/support • Adequate professional support • Improved coping/problem solving • Improved emotional regulation • Reduced depression and anxiety Acton et al 2001; Brodaty et al 2003; Burns et al 2001; Gitlin et al 2003; Kneebone et al 2003; Pusey et al 2000; Schultz et al 2002; Smits 2007; Van den Wijngaart 2007

28. Reitman Centre CARERS Group Intervention • A 10 week evidence informed program delivered in small groups of 4 – 6 caregivers • Either spouses or children of people with dementia • Tailored to the individual caregivers and the specific problems each caregiver faces • Lead by trained group leaders to address these problems using problem solving techniques (PST) and simulation • Understand emotions and deal with them in the group therapy J Sadavoy & V Wesson 2015

29. 3 Key Methods (Manualized) 4 PST Groups (2.5 hours) Coping, Problem solving 6 Skills Training Simulation Groups: CGs practice new techniques of interaction and communication through simulation with SPs Skills, mastery Group Psychotherapy Techniques Care Recipient Group

30. The CARERS Program Structure • Thorough Assessment • 2.5 hour sessions • Week 1: Introduction, laying the foundation, dementia education and the caregiving experience • Weeks 2 - 4 PST • Weeks 5 - 9 Simulation (or PST if needed) • Week 10 Simulation and closure • Maintenance (monthly 1 hour sessions X 1 year) • Individual support or referral as needed

31. PST is a specific intervention to reduce emotion-focused coping J Sadavoy 2014

32. Why learn PST?The connection between problems and caregiver burden

33. What is PST? Abstract problems are converted to a practical solvable form work is done on issues specific to each carer re-establishes sense of mastery and competence

34. PST helps organize and deal with complex issues for both CG and therapist • Create a problem list • Clarify the problem • Set a goal • Brainstorm solutions • Weigh the pros and cons of potential solutions • Choose solution(s) • Develop a plan • Implement plan and evaluate J Sadavoy & V Wesson 2015

35. Simulation: Learning from hands-on experienceA focus on interaction and relationship • Simulation is a guided re-enactment of a real recent incident in the caregiver’s life • It makes use of a specially trained simulated patient who enacts the part of the person with dementia; the caregiver is herself • During simulation emotional challenges and gaps in knowledge, skills and attitudes are identified • Expert coaching helps the caregiver learn new more effective approaches J Sadavoy & V Wesson 2015

36. Common Interpersonal Challenges Addressed Through Simulation ScenariosElicited from caregivers then simulated using expert coaching to improve management and interpersonal skills Responding to paranoia/accusations against the caregiver How to say no to unreasonable demands Dealing with refusaland apathy, upset, confusion, agitation Dealing with family tensions, Telling others about the illness of their loved one Asking for Help Talking to employers (working caregivers)

37. Foundational Principles

38. Essentials of psychotherapy Specific factors include methods such as PST Non-specific factors include: • therapeutic alliance • belief in the effectiveness of the program (both therapist and carer) • group support • shared experience • the installation of hope • giving to others • bonds of friendship

39. Therapeutic Alliance • Collaborative personal bond • With group members, between group members and with group as a whole • Requires that group leader demonstrate • Accurate resonance (empathy) • Recognition of core struggles of each carer • Ability to reframe challenges (make understandable) • Group leader must also • Create and deepen carer’s understanding • Establish self as trusted ally

40. Identifying and engaging with emotion Maximize learning and caregiving abilities through a parallel focus on carer’s internal emotional experience: • Nurture self-awareness • Recognize and Label emotions e.g. Anger, entrapment loss and grief • Acknowledge efforts • Normalize burden in caregiving • Encourage self-care

41. Maintaining prime focus Balance: • Therapeutic listening • Addressing practical problems • Involving all group members

42. Effective interrupting • Break into carer’s narrative at an opportune moment • Be sensitive (warm and sincere) • Commit to return to problem if possible Interrupting to educate can: • Provide comfort • Help to make sense • Open discussion • Lower emotional intensity

43. Clinical Outcomes are Measured Eight pre/post measures are used to evaluate the CARERS program’s effect on caregivers’ psychological functioning, caregiving skill sets and stress coping styles: • Coping Inventory in Stressful Situations (CISS) • Care-giving Competence • Geriatric Depression Scale • Short ZaritBurden Interview • Mastery • Overload • Role Captivity • Revised Memory and Behavioural Checklist J Sadavoy & V Wesson 2015

44. Pre-intervention versus Post-intervention Findings t-Test Analysis • Pre- and post- scores are significantly different for 4 constructs: • Emotion-oriented coping style • Overload • Depression • Caregiving Competence J Sadavoy & V Wesson 2015

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