Working with the Cognitively Impaired & their FamilyJASA Elder Abuse ConferenceJune 3, 2015
Robin Fenley, PhD, LCSWNYC Department for the Aging
Caregiving by the Numbers
Age is the biggest risk factor for AD 65+ expected to double to 70 million by 2030 >65 million informal caregivers of persons
18+ 1.4 million in NYC (2010 BRFS Report)
>15 million informal caregivers of persons with dementia or other cognitive impairments (2015 Alzheimer's Disease Facts and Figures)
Initial Hurdles
Reluctance to accept caregiver role 38% of AD caregivers report perceived
obligation (2015 Alzheimer's Disease Facts and Figures)
Competing demands Personal life Family life Professional life
Self-identification
Role Changes Changes in relationships
Responsibilities & expectations Marital Parental Sibling
Multi-generational caring Sandwiched between older adult & kids Grandparents/grandchildren
The Care Issues..
Coordination of… IADLs
Meals – shopping/preparing
Housekeeping – bills/cleaning
Socialization/Companionship
Transportation – MD visits ADLs
Personal care
Financing Insurance Private pay Benefits & entitlements
Unique to dementia Managing aggressive behaviors Wandering Repetitive activity Nighttime sleep disturbances (depressive mood, agitation,
anxiety)
Time Spent Providing Care
Average >20 hrs/wk, ~5 years (NAC/AARP, 2009)
Women: 22 hrs/wk; Men: 17 hrs/wk Hispanic & African Americans: 30 hrs/wk Non-Hispanic Caucasians: 20 hrs/wk Asian-Americans: 16 hrs/wk (2015 Alzheimer’s Disease Facts and
Figures)
Dementia caregivers: 27 more hrs/month than non-dementia caregivers (2015 Alzheimer's Disease Facts and Figures)
Who are These Caregivers? Primarily adult children
66% female 34% male
Living with or near care receiver 57% of caregiver respondents employed
70% rearrange work schedule, frequently absent, take unpaid leave, resign/retire early
Alleged abusers Adult child of aging parent (47%) Equally split between men & women
NAC/AARP, 2009; SAMHSA
Caregiving Stressors AD caregivers provide 85% of help without
formal support (2015 Alzheimer's Disease Facts and Figures)
~10 - 20% caregivers use formal servicesTransportationInformation on financial assistanceRespite servicesTechnology NAC/AARP 2009
Unrelieved stress can be fatal to caregivers (Schultz & Beach, 1999)
Risk Factors for Abuse by Caregiver Heightened perception of burden
>60% of AD caregivers report high or very high levels of emotional stress (2015 Alzheimer's Disease Facts and Figures)
Psychological aggression of care receiver (NCEA/NAPSA 2005)
Allegations of infidelity/theft Misidentification
Care receiver physically assaultive (NCEA/NAPSA 2005)
Depression >One-third report depressive symptoms (2015 Alzheimer's Disease Facts and Figures)
Warning Signs from Caregiver Emotional/financial dependence on older adult Dysfunctional personality characteristics
The risk for abuse high when these adult children live with the parent
Presence of mental illness History of or active alcohol/drug abuse Living with the older adult
Living with another and being socially isolated have been associated with higher rates of abuse
NCEA/NAPSA 2005
Theories to Frame Interventions
Caregiver Stress Social Learning Social Exchange Background-Situational (Dyadic-Discord) Power & Control Ecological Model Biopsychosocial Model
Pathologies of agingJackson & Hafemeister, 2013
Theories…
One theory likely not fully adequate to address situation
Intervention will depend upon Characteristics of alleged abuser and the abused Nature of their relationship & type of abuse
reported Triggering factors
Jackson & Hafemeister, 2013
Intervention Options Case management
Assessment, info, planning, referral, care coordination Psychoeducational
Structured information regarding disease process, behavior management techniques, resources & services
Counseling Activity to address pre-existing problems, reduce conflict, improve
family functioning Psychotherapeutic approaches
Therapeutic relationship for problem solving, anger management, recognition of trigger points, substance abuse tx, etc.
Interventions… Support groups
Less structured opportunity to express feelings and concerns, reduce sense of social isolation
Respite Temporary, scheduled relief of caregiver
Training Programming designed to improve competence and functioning
of person with dementia Multicomponent approaches
Strategies that combine education, support and respite into a single long-term service
Sorensen et al, Pinquaret, et al
Continuum of Service Options
Friendly visiting Telephone reassurance Escort Medical Alert/Safe Return Home delivered meals Respite care
In-home services Adult day care
Caregiver programs Case management Senior centers Assisted living residences
(ALRs) Assisted living programs
(ALPs) Skilled nursing facilities
(SNFs)
Change the Caregiving Narrative!
It’s okay to ask for help Mastery/self-esteem Spiritual growth Sense of fulfillment Renewal of commitment
Working with the Person with Dementia Balance safety concerns & right to self-determination
The right to accept or refuse services, but also to be safe Assume decision making capacity unless court determines
otherwise Within window of cognitive opportunity, support efforts to
maintain Independence
Optimize personal functioning Connectedness
Maximize ability to relate to others and reduce isolation Engagement
For cognitive stimulation & self fulfillmentNCEA/NAPSA 2005
Engagement
Arts Meet Me at MoMA Sweet Readers
Movement/dance Mark Morris
Concerts The Unforgettables
Creative writing
Poetry Theatre Trips Senior center Support group Adult day program
Best Practice Guidelines Recognition of role of culture & wide diversity of
individuals Work toward personal & organizational cultural
competence Availability of culturally & linguistically appropriate
Informational materials Legal documents & forms Services Staff
NCEA/NAPSA 2005
Guidelines…
Develop communication skills to engage & build trust with Person with dementia Family/alleged abuser Collateral contacts
Guidelines… Ongoing assessment of self-care ability &
type of care needed Identify strengths & social supports Start with least restrictive service options Involve the person with dementia in service
plan development, as possible Know when to refer for capacity evaluation
NCEA/NAPSA 2005
Guidelines… Understand benefits of working as a team
MDTs/NYCEAN Integrate care management
Learn roles & responsibilities of community resource providers
Expand collaborative partnerships APS, Health/mental health, Financial community, Law
enforcement, Legal resources, Others (immigration, nat’l orgs, etc)
NCEA/NAPSA 2005
Caregiving in the Shadows Undocumented Grandparents LGBT Disabled Mentally Ill Traumatic Brain Injured Veterans Children
~250,000 providing some degree of dementia care (2015 Alzheimer's Disease Facts and Figures)
ResourcesNYC Department for the Aging Alzheimer’s & Caregiver ResourceCenter212. 442.3086www.nyc.gov/aging
NYC Human Resources AdministrationInfo-line: 718.557.1339www.nyc.gov/hra
NYS Office on AgingSenior Helpline: 800.342.9871www.aging.ny.gov
Alzheimer's Association, NYC Chapter646. 744.290024-hour helpline: 800.272.3900www.alz.org
Mental Health Association of NYC 1-800-LIFENET (crisis referral)
National Association of ProfessionalGeriatric Care Managers, NYC Chapterwww.nygcm.org
Resources Office of Temporary & Disability Assistancewww.otda.ny.govAssistance with cash, heating, food, SSD/SSI,refugee & immigrant assistance
Dept. of Healthwww.health.ny.govInfo on Medicaid RedesignDisability.govwww.disabilityinfo.gov
Partnership for LTC www.nyspltc.orgInfo on LTC insurance & M’caid extended coverage
Centers for Medicare & Medicaid Services
www.cms.gov Medicarewww.medicare.gov Nursing Home Comparewww.medicare.gov/NHCompare Home Health Comparewww.medicare.gov/HomeHealthCompare
USA.govwww.seniors.govInfo on caregiving, consumer protection,money, housing, volunteerism+
Resources
Eldercare Locator800.677.1116www.eldercare.gov
Paratransit servicewww.mta.info/mta/ada/paratransit.htm#access
Health Information Tool for Empowerment (HITE)
www.hitesite.org/About.aspx
National Academy of Elder Law
Attorneyswww.naela.org
National Alliance for Caregiving
www.caregiving.org
Family Caregiver Alliancewww.caregiver.org