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