I-SEE-U Dementia Care: A Framework to Identify and Support Caregivers at Risk Elder Abuse Ontario Conference Nov. 4, 2015 Rhonda Feldman, High Risk Caregiver Program Lead LJ Nelles, Educator Einat Danieli, Psychogeriatric Resource Consultant to Primary Care TC-LHIN The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer Support and Training
Workshop objectives 1. Review how caregivers wellbeing is important in preventing elder abuse 2. Introduce the I-SEE-U framework for considering caregivers and review resources 3. Do an exercise to apply the model
Some context: Aggressive behaviours are common in dementia even without prior abuse in the relationship Caregivers who have been abused by the care recipient are more likely to direct abuse back In dementia, both elderly caregiver and care recipient can be at risk for abuse
ENVIRONMENT CAREGIVER RISK RELATIONSHIP PERSON WITH DEMENTIA
Paired Discussion Turn to your neighbour and talk about a situation in which working with a family caregiver was a challenge What elements contributed to the challenge? Consider factors of the caregiver, the person with dementia, their relationship, and the environment 5 minutes
Environment Low social support Elder Person Cognitive impairment Behavioural problems Risk factors for elder abuse Living with the care recipient Psychiatric illness Functional dependency Person engaging in abusive behaviour Caregiver burden or stress Relationship Family disharmony/ Conflictual relationships Poor physical health Trauma or past abuse Low income Ethnicity Psychiatric illness Drug/alcohol use Care demands from others Poor understanding/ Unrealistic expectations Inexperience/ unwillingness to provide care (From Johannesen & LoGiudice 2013; Kohn & Verhoek-Oftedahl 2011) History of family violence
Coping Strategies Emotion-Focused Coping Emotional support Religion Positive reframing Humour Acceptance Problem-Focused Coping Taking action Planning Instrumental support Dysfunctional Coping Avoidance Self-distraction Denial Venting/ High expressed emotion Substance use Giving up (From Wong & Wallhagen, 2014; Cooper et al., 2008; Carver, 1997)
Case example: Mr. and Mrs. Stevens
What can we do? Include Screen Educate Extra support Understand
Include Caregiver as a partner of the care team and as a crucial component of the care plan
Ask? Screen & Identify What are your biggest challenges right now? How do you feel you are managing/coping with the demands on you? Do you feel like you have enough support? Observe Gaps in knowledge Gaps in approach Distress and fatigue Utilize clinical screening tools
Educate Identify knowledge gaps Provide information Empower for learning and skill building
Extra support Skills building & Coping strategies Knowledge & Education Respite & Homemaking CAREGIVER (THE DYAD) Emotional & Psychological support System navigation
Understand Two parts to understanding: 1. Understand the caregiver s perspective 4 elements The why behind the what They are more than a caregiver 2. Communicate your understanding Validate & reflect Effective use of non-verbal communication
Reflect & Review Prevention of abuse comes from building relationships of support: Include the caregiver as a partner in care and part of the care plan Screen & identify areas of potential risk caregiver, care recipient, relationship, environment Educate about disease, about resources to support Extra help listen to identified needs of caregiver Understand being able to express connection will save time and avoid crisis
Self care
Einat Danieli Psychogeriatric Resource Consultant for Primary Care 416-586-4800 Ext. 5251; edanieli@mtsinai.on.ca Rhonda Feldman High Risk Caregiver Program 416-586-4800 Ext. 3212; rfeldman@mtsinai.on.ca
References Alspaugh, M. et al. (1999). Lognitudinal patterns of risk for depression in dementia caregivers: Objective and subjective primary stress as predictors. Psychology & Aging, 14, 34-43. Bookman A., Harrington M., (2007). Family Caregivers: A shadow workforce in the Geriatric Health System. Journal of Health Policies, Policies and Laws, Vol.32/6, Duke University Press. Brodaty, F & Donkin, M (2009) Family caregivers of people with dementia. Dialogues Clin Neurosci, 11: 217-228. Brown, P. et al. (1990). Caregiver burden should be evaluated during geriatric assessment. Journal of the American Geriatric Society, 38, 455-460. Burns, A. & Rabins, P., (2000). Carer burden and dementia. International Journal of Geriatric Psychiatry, 15, S9-S13. Carver, CS. (1997). You want to measure coping but your protocol s too long: Consider the Brief COPE. International Journal of Behavioral Medicine, 4(1), 92-100. Cohen et al, (2006).Development of a Screening Tool for Identifying Elderly People at Risk of Abuse by Their Caregivers. Journal Of Aging And Health, 18 (5), 660-685 Cooper, C., et al. (2008). Coping strategies, anxiety and depression in caregivers of people with Alzheimer s disease. Int J Geriatr Psychiatry, 23, 929-936. Cooper, C. et al (2010). The determinants of family carers abusive behaiour to people with dementia: Results of the CARD study. Journal of Affective Disorders, 121, 136-142. Coyne, C. C et al (1993). The relationship between dementia and elder abuse. The American Journal of Psychiatry; 150 (4) 643 Johannesen, M. & LoGiudice, D. (2013). Elder abuse: a systematic review of risk factors in community-dwelling elders. Age and Ageing, 42, 292-298. Hooker, K., et al. (1992). Mental and physical health of spouse caregivers : the role of personality. Psychological Ageing, 7, 367-375. Kohn, R & Verhoek-Oftedahl, W. (2011) Caregiving and Elder Abuse. Medicine and Health/Rhode Island, 94(2), 47-49. Sadavoy J, Wesson V. (2012) Refining Dementia Intervention: The Caregiver-Patient Dyad as the Unit of Care. CMAJ; 2: 5-10. Sadavoy J., Wesson V., Nelles J. L., (2010). The Reitman Centre CARERS Program A Training Manual for health professionals. Reitman Centre, Mount Sinai Hospital Tremont, G. (2011). Family caregiving in dementia. Medicine & Health/Rhode Island, 94(2), 36-38. Wong, CC & Wallhagen, MI, (2014). Family caregivers of individuals with frontotemporal dementia: Examining the relationship between coping and caregiver physical and mental health. Journal of Gerontological Nursing, 40(1), 30-40.