Emerging Trends in Family Caregiving Using the Life

Emerging Trends in Family Caregiving Using the Life Course Perspective Elise K. Eifert, Ph. D(c), CHES Assistant Professor, Florida Atlantic University November 11, 2014

Introduction Our country is aging! Increase in chronic disease or disability and people who need intermittent or long-term care Providing this care is typically done by family Trends related to family caregiving will emerge

Demographics By 2030, there will be about 72. 1 million older persons, more than twice their number in 2000→ 19% of population Mostly because of baby boomers 85+ is fastest growing segment of older adults Often need the most personal care and support

Chronic Disease & Family Caregiving “Health care hasn’t slowed the aging process so much as it has slowed the dying process…“ – Dr. Ezekiel Emanuel (2014) Family provides an estimated 90% of longterm care Compare to paid, professional caregivers 48. 9 million caregiver or 1 in 5 households in 2009 Expected to increase by 85% from 2000 to 2050

Baby Boomers Individuals born between 1946 and 1964 76 million babies! 65. 2 million (2012) All be 65 in 2029 Influenced by distinct circumstances that affected how they think and behave as well as what they value How will they respond to caregiving situations?

Generational Markers TV Vietnam & Korean wars Scandals such as Watergate Availability of oral contraceptive & legal abortion Protests such as the women’s and civil rights movements College educated and held white collar jobs Lower rates of marriage, higher rates of divorces, and gave birth to fewer children More discretionary income but less savings

Younger vs Older OLDER (1945 -1954) YOUNGER (1955 -1964) Individualistic Focused on work Making a difference in society Graduated college during “free love” years Males experienced conscription (until 1973) Abnormally high expectations Seek balance between work & family Making a difference within himself Graduated college during conservative Reagan years Males have less military service

Purpose & Research Question

Life Course Perspective Interplay between man and history offers context for understanding common occurrences “…looks at how chronological age, relationships, common life transitions, and social change shape people’s lives form birth to death” (Hutchinson, 2007)

Life Course Perspective Cohort or Generation Group of persons who were born at the same historical time Transitions Changes in roles and statuses Trajectory Long-term patterns involving multiple transitions Life Event Abrupt occurrence that involves change Turning Point Life event that alters the life course trajectory

Methods Guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) (Moher et al. , 2009)

Identification Records identified through database searching (n = 2, 034) Additional records resulting from online search (n = 12, 351) Records screened (n = 437) Included Eligibility Screening Records after duplicates removed (n = 1, 320) Records excluded (n =250) Literature fully assessed for eligibility (n = 187) Literature excluded, with reasons (n = 125) Studies included in synthesis (n = 62)

Results 1. 2. 3. 4. 5. 6. Increasing use of digital technology for information gathering and support Increasing diversity Strained finances and loss of entitlements More complex care and care management Demand for public policies related to caregiving Balancing work, family, and caregiving

Increasing use of digital technology for information gathering and support Availability of PC, tablets, cell & smart phones, MP 3 players, GPS, game consoles, digital cameras, web cameras, “apps”, etc. (Pew Research, 2010) Caregivers recognize the benefits of technology (FCA, 2012; United Healthcare & NCA 2011) Boomers are heavy internet users (Cline & Hayes, 2001; Neilson 2012;

Increasing use of digital technology for information gathering and support continued… Social network sites for support (Hamm et al, 2013) Caregiver “Apps” (Hasman 2011; US VA 2011) Online communities and support groups (Colvin et al 2003; Aging Care 2013; Glueckauf et al, 2003) Telemedicine (WHO 2010; Ludwig et al 2012)

Increasing use of digital technology for information gathering and support continued… From a Life Course Perspective… Boomers are situated in a specific time and place and experienced the emergence of the Internet as an everyday technology Timing of Internet’s arrival in life trajectory affect experiences (older vs younger) Use of technology may be dependent on life stage and events

Increasing diversity Traditional caregiver profile is changing Race & Ethnicity ↓ white, ↑ other racial or ethnic minorities (Vincent & Velkoff 2010; Administration on Aging 2012; NAC & AARP 2009) Caregiving experiences differ among racial & ethnic groups (Scharlach et al 2008; Pinquart & Sorenson 2003; National Academy on an Aging Society 2000; Dilworth-Anderson et al 2002; Toseland et al 2003)

Increasing diversity continued… Gender (NAC & AARP 2009) Caregiving has traditionally been a female role (Alzheimer’s Association 2012) Males respond to & handle caregiving differently (Pinquart & Sorenson 2006) Sexual Orientation (Grant & National Gay & Lesbian Task Force 2010) More likely to be single, childless, and estranged from biological family (MAP & SAGE 2010) Face stigma, discrimination, & legal issues surrounding caregiving (Metlife 2010)

Increasing diversity continued… From a Life Course Perspective… Human agency Cumulative advantage-disadvantage (CAD)

Strained finances and loss of entitlements Older adults are economically vulnerable (National Council on Aging 2012) Females & Minorities Costs of getting older are rising while resources are decreasing (Meschede, Sullivan, & Shapiro 2011)

Strained finances and loss of entitlements continued… Boomers less likely to have pensions and benefit plans (Meschede et al 2011) First generation to have government programs (“entitlements”) from birth until death (Roszak 2009) Dependency Ratio (Age Works 2004; SSA 2013) 16% of elderly fall under Federal Poverty Line→ higher risk if experience health crisis (O’Brien et al 2010; Short & Census Bureau 2011)

Strained finances and loss of entitlements continued… Caregiving is a threat to financial stability and retirement security (Wakabyashi & Bonato 2006) ~42% spend $5000 a year in out of pocket expenses (Feinberg et al 2011) 70% make work accommodations [reduce hours, forfeit promotions, less contributions to 401(k)] (NAC & AARP 2005) Some leave workforce all together (Metlife 2011)

Strained finances and loss of entitlements continued… From a Life Course Perspective… Assets and wealth accumulate over a lifetime Life events like a major illness or transitions like caregiving can be catastrophic to financial stability Younger baby boomers may have less entitlement benefits than older baby boomers

More complex care and care management Chronic disease management requires a comprehensive and integrated approach to care (Hwang et al 2011; Goldberg & Solloway 2011) Complex healthcare system with little communication between different sectors (Wagner 2013)

More complex care and care management continued… Caregivers perform medical/nursing tasks with little to no training (medication management, injections, wound care, physical therapy, etc) (Reinhard, Levine & Samis 2012) ↑ in caregiver burden (Given et al 2001; Papastavrou et al 2007)

More complex care and care management continued… From a Life Course Perspective… Few individuals look beyond themselves or close family members for help Human lives are interdependent and the family is the primary focus Caregiving is becoming a normative life event

Demand for public policies related to caregiving Lack of (funded) federal policy that supports family caregivers (Riggs 2008) Older adults have high voter turnout (Binstock 2000; Martinson & Minkler 2006) Need for a more policy that supports caregiver (Feinberg, Wolkwitz, & Goldstein 2006; FCA 2009)

Demand for public policies related to caregiving continued… From a Life Course Perspective…. Boomer history of political activism Belief that government has an obligation to support them considering the sacrifices they are making

Balancing work, family, and caregiving Will be caregivers while being employed and have dependent children Delaying retirement age (Kromer & Howard 2013) Caregiving negatively effects work performance (Wagner & Niles 2005; NAC & AARP 2005)

Balancing work, family, and caregiving continued… Caregiving cost employers (Metlife & NAC 2010) Boomers as “sandwich” generation (Grundy & Henretta 2006; Parker & Patten 2013; Riley & Bowen 2005)

Balancing work, family, and caregiving continued… From a Life Course Perspective…. Boomers had different opportunities for education, work, and family which altered their trajectories towards simultaneous, demanding roles

Discussion Knowledge of baby boomer caregivers is limited and fragmented First literature review to examine the generational impact of baby boomers on family caregiving using the life course perspective

Implications Boomer caregivers will have more options and choices because of technology Increased understanding of caregiving experiences, care-related values and beliefs, and care practices Boomers will be at risk for poverty and outliving resources especially if they are caregivers or face a health crisis

Implications Caregiving will be a more complicated and precarious experience than ever before which could cause an increase in caregiver stress & burden Increase in state and federal policies that support family caregivers More awareness of employed caregiver needs

Conclusion Highlight emerging trends related to family caregiving Address the needs of baby boomer family caregivers

Any Questions? ? ?

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