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Aging in Community : Mobilizing a New Paradigm of Older Adults as a Core Social Resource Kathy Black, Debra Dobbs and Tiffany L. Young Journal of Applied Gerontology published online 20 November 2012 DOI: 10.1177/0733464812463984 The online version of this article can be found at: http://jag.sagepub.com/content/early/2012/11/06/0733464812463984

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463984 4Journal of Applied GerontologyBlack et al.

JAGXXX10.1177/073346481246398

Article

Aging in Community: Mobilizing a New Paradigm of Older Adults as a Core Social Resource

Journal of Applied Gerontology XX(X) 1­–25 © The Author(s) 2012 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464812463984 http://jag.sagepub.com

Kathy Black1, Debra Dobbs2, and Tiffany L.Young2

Abstract Dignity and independence are widely considered as core concepts to aging well, yet little research has explored how older adults perceive these issues in the context of community life. Moreover, little is known regarding the ways in which the broader public views and enhances aging with dignity and independence with their older residents. Using participatory action research, multiple methods of qualitative inquiry, and tenets of appreciative inquiry, this article reports on a community-based initiative aimed to better understand the positive aspects of aging with dignity and independence. Synthesized findings yielded 6 “actionable themes”: (1) meaningful involvement, (2) aging in place, (3) respect and inclusion, (4) communication and information, (5) transportation and mobility, and (6) health and well-being. The findings invoke a new paradigm for community aging that highlights the unique contributions of older adults as a core social resource. Implications for mobilizing community action to promote aging with dignity and independence are discussed. Keywords participatory action research, aging in place, appreciative inquiry, communitybased participatory research Manuscript received: May 2, 2012; final revision received: August 14, 2012; accepted: September 14, 2012. 1

University of South Florida Sarasota/Manatee, Sarasota, FL, USA University of South Florida, Tampa, FL, USA

2

Corresponding Author: Kathy Black, University of South Florida Sarasota/Manatee, 8350 N. Tamiami Trail, Sarasota, FL 34243, USA Email: kblack@sar.usf.edu

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Across America communities are grappling to respond to the unprecedented growth among their oldest residents. Adults aged 65 years and older comprise 12.9% of the nation’s population and upward of 95% live in the community (Federal Interagency Forum on Aging Related Statistics, 2010). Although concentrations of community-dwelling older adults vary by region across this nation, U.S. Census data suggest that many communities have experienced sharp demographic increases of older persons over the past decade, with more locales expected to experience increases in the years ahead (Vincent & Velkoff, 2011). Among the many issues faced by community-dwelling older adults, enhancing dignity and independence is of particular importance. Both concepts are widely regarded as integral to aging well, representing key objectives under the Older Americans Act—the nation’s premiere legislation exclusive to older adults (U.S. OAA, 1965). Indeed, promoting and maximizing dignity and independence among older adults represent the cornerstone of both public and private programs serving older adults in communities today. However, publicly funded home and community-based services are unlikely to keep pace with future needs (Browdie, 2010). Moreover, many older adults and their families may be unable to afford private sources of support due to the nation’s economy that has greatly impacted the finances of all Americans (U.S. Government Accounting Office, 2011). Consequently, pragmatic efforts are needed to augment supports to older adults in the community in ways that enhance older adults’ dignity and independence. With the exception of a few initiatives from the Robert Wood Johnson Foundation (see, for example, Boston Partnership for Older Adults, 2003; Care for Elders, 2004), little is known regarding how community-dwelling older adults view dignity and independence or the ways in which the broader community impacts the aging experience among our nation’s growing older adult population. This study aims to advance our understanding of older adults’ perceptions and the broader contributions of community residents in affecting dignity and independence in everyday interactions with older adults.

Compounding Circumstances Impacting Aging With Dignity and Independence Many older adults struggle with compounding circumstances that affect their ability to live independently and with dignity as they age. Chief among the issues impacting dignity and independence with age are physical, social, and psychological changes impacting health. Today, the vast majority of the nation’s older population will experience declining health and functional incapacity with age. According to the U.S. Centers for Disease Control (2011), eight of 10 people aged 65 years and older have at least one chronic condition, and 50% have two or more.

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Oftentimes, aging and chronic conditions cause limitations that lead to increased dependence on others to meet ongoing needs. Yet with advancing age, older adults’ social networks may become unavailable due to caregiving burdens, geographical distance, or death of family and friends. Consequently, interactions within the context of one’s social network of relationships can oftentimes be strained, which may lead to isolation and depression (Blazer, Burchett, Service, & George, 1991; Ciechanowski et al., 2004). In addition, psychological issues such as memory loss often result in loss of autonomy and security (Steeman, De Casterlé, Godderis, & Grypdonck, 2006). At the same time, older adults indicate the importance of aging in place in their communities to maintaining their independence and autonomy (Wiles, Leibing, Guberman, Reeve, & Allen, 2012). Therefore, individual dignity and independence may be impeded by the dynamic and complex issues encountered in everyday living as one ages that underscores the need to better understand how older adults perceive these impacts as well as perceptions of the broader community in enhancing dignity and independence in aging.

Community-Based Approaches to Enhance Aging There has been increasing focus on communities—as the center of daily life— and as the local and logical entity to best meet both the current and future needs of our nation’s elders. Current federal policies include a growing number of provisions for local efforts to promote aging in place (Greenfield, 2011). In 2012, the U.S. Department of Health and Human Services announced the development of the Administration for Community Living, which is designed to promote aging in place for the nations’ burgeoning senior population (http:// www.hhs.gov/acl/). Yet recent evidence suggests that communities are woefully underprepared to respond to this imperative. For example, a nationwide survey conducted by the International City/County Management Association, National Association of Area Agencies on Aging (n4a), MetLife Foundation, and other governmental and community partners found that little progress was made by communities between 2006 and 2010 to address the growing needs of older adults within the community on a variety of measures including health, transportation, housing, and civic engagement (n4a, 2011). In particular, limited progress on supports to remain independent at home was noted in the report as “striking.” Despite these shortcomings, there have also been some notable movements occurring across the country. The Community Partnerships for Older Adults (CPFOA) represents a major approach to enhance communities’ capacity to assist older adults as they age in place (Robert Wood Johnson Foundation, 2009). The program has financed 15 innovative community-based projects with a range of traditional (aging service

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providers) and nontraditional partners to enhance local responses to older residents’ needs. Deficits in community supports to dignity and independence indicated from assessments by older adults in two different communities where the projects were being funded included lack of affordable housing and long-term care, access to transportation, home safety, and health and the inability to be financially prepared for retirement, as barriers to aging well in the community (Boston Partnership for Older Adults, 2003; Care for Elders, 2004). Efforts to enhance community supports from CPFOA include engaging the public school system to train high school students to assist older adults at home, creating a travel voucher system to provide transportation, and training local public employees from the post office and local businesses to recognize signs of need in older adults they encounter daily. By otherwise meeting the needs of older adults, the community-based efforts are intended to alleviate burdens on increasingly limited services, which will allow allocating resources more effectively and efficiently. In addition, community capacity is increased as well as improvements in the quality of life for older adults. The Center for Civic Partnerships (CCP; www.civicpartnerships.org), which sponsors the California Healthy Cities and Communities Program, represents another key movement in enhancing community capacity to meet the needs of older adults. Like the CPFOA, the movement aims to proactively plan for the large influx of aging Baby Boomers. Approximately 76 million Americans born between 1946 and 1964 will turn 65 beginning in 2011 and continuing throughout the next 19 years. The CCP has created a toolkit for community planning, engagement, and action. The toolkit includes a planning overview, step by step data gathering activities, case studies, and resources for communities to emulate throughout the nation. All of the movements noted are premised upon the reciprocal benefits to both the general community as well as an active and engaged older adult population. Given the growing importance of enhancing the dignity and independence for all older adults and the importance of aging in community, innovative and nontraditional research is needed to better understand, and ultimately enhance aging well in community (Blair & Minkler, 2009; Emlet & Moceri, 2012). This current study utilized participatory action research (PAR) and multiple methods of qualitative inquiry to better understand how older adults, and the broader community, perceive and promote dignity and independence in the context of everyday community life.

Conceptual Frameworks For the purposes of the study, the concept of community was derived from ecological theory, and specifically, a “person in environment� (PIE) perspective

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Figure 1. Appreciative inquiry model

(Germain & Gitterman, 1980). The viewpoint underscores the dynamic and reciprocal relationship between people and their surroundings on multiple levels including: micro (e.g., person to person), mezzo (e.g., person to organization), and macro (e.g., person influenced by broader community structural factors). The PIE perspective combines transitional life events (i.e., aging), environmental circumstances (i.e., geographic community), and interpersonal processes (i.e., interactions with others) to frame the context of everyday communitybased life. Appreciative inquiry (AI) was used to address the positive aspects of aging with dignity and independence in the course of everyday, community life. AI is a framework that builds on participants’ strengths and offers a positive approach to discovery that leads to actionable change (http://appreciativeinquiry.case.edu/). The approach is based on social constructionism, which is premised on the supposition that participants and their perceptions of life experiences in a variety of areas are subjectively relevant and derive meaning as an aspect of communication and interaction with others. The AI model encourages multiple voices and shared perspectives, leading to collective meanings for a given group of participants. Although the initial goal of the four-step AI model is inquiry, or appreciating what is best (i.e., Discovery phase), the model is also used as a process with subsequent phases (Figure 1). The Dream phase calls for envisioning what might be. It involves cocreating a shared vision of the future based on positive findings identified in the Discovery phase. The Design phase builds upon ways in which

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to capture and promote changes that will advance toward the ideals determined in the previous phase. The Destiny phase builds upon the momentum to implement and sustain positive change envisioned in the process. The AI model is particularly well suited both to better understand, and ultimately, to mobilize the community about everyday positive interactions with older adults that enhance dignity and independence among older adults.

Method Study Design PAR and multiple methods of qualitative inquiry were utilized to gain an indepth understanding of how older adults, and the broader community of persons of all ages, view and promote aging with dignity and independence in the context of everyday life. PAR is a systematic approach to inquiry in which those affected by an issue under study are included in the research for the purpose of social action (Israel et al., 2008). Though novel in engaging older adults as partners, the approach is considered valuable (Blair & Minkler, 2009). The process is collaborative and equitable in that partners are included throughout the research, from study design, data collection, analysis, and dissemination. Through such involvement, PAR is empowering to community partners in that it enhances their awareness, involvement, and ultimately in changing the social conditions under study. PAR invokes capacity building on the following levels: micro (i.e., individual action), mezzo (i.e., persons influencing organizational change), and macro (i.e., broad-scale community change). Through its dual focus on research and action, the PAR process provides translational work leading to actionable change by an engaged citizenry. Qualitative methods provide insight through the collection of detailed subjective narratives based on lived experiences (Patton, 2002). This approach is useful to advance phenomenological understanding of a given topic, and within the context of a PAR approach, qualitative data collected via community forums, focus groups, and open-ended surveys can be useful to better understand the local subculture or context that influences participant’s word choice, opinions, frequency, intensity, and specificity of responses (Teufel-Shone & Williams, 2010). Focus groups with older adults are considered valuable in applied research (Stewart, 2003). The broader PAR approach ensures the engagement of community members who can participate and provide valuable insiders’ perspectives in the data collection, analysis, and dissemination of research outcomes (Teufel-Shone & Williams, 2010).

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Sampling The study collected three different samples of participants for the qualitative inquiry that included community forums (n = 113), seven focus groups (51 participants), and online surveys (n = 320). Following the PAR model, a series of 15 community forums were held with community residents of all ages (12 and older), which was recommended by the advisory group in consultation with the research team. To ensure maximum input from the community, the meetings were held at diverse public locations throughout the community including all of the county’s libraries. Purposive sampling was used to target older adults residing throughout the community for the focus groups and online surveys. Maximum variation sampling was utilized to promote representation of the following demographic characteristics: age, gender, ethnicity, socioeconomic status, living arrangement, religion, educational attainment, family composition, and functional status, geographic location within the community. For maximum community participation in the study, inclusion criteria included resident of geographic community and age 65 or older.

Measures The data collection tool used for the community forums was based on the tenets of AI, representing a strengths-based approach to identify elements of positive interactions between older adults and persons of all ages throughout the community. Consistent with an AI approach, the tool requests that participants provide narrative input upon reflection of a past experience whereby a positive interaction occurred. The “Tell your Story” tool was endorsed by consensus of the community advisory group and is listed in Table 1. The data collection tool used for the focus groups and open-ended surveys was developed to elicit older adults’ perceptions of dignity and independence within the context of everyday living. The tool’s questions were used as a semistructured interview guide for the focus group and the same questions were written in print for those completing the online survey. The questions addressed issues pertaining to dignity and independence (i.e., “What does the term dignity mean to you?”) Participants were encouraged to reflect upon their past personal experiences (i.e., “Have you ever experienced a challenge to your dignity?”). Probes were used to further elicit participants’ responses (i.e., “Are there any persons, groups, or organizations that you believe affect your dignity in the course of everyday life in the community?”). After summarizing the study’s purpose and

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Table 1. Data Collection Tool: Share Your Story Think of a time, a particular instance or episode, when you experienced a positive interaction with an older person (65+). This was a time when you felt successful and proud of what you were doing. The older person’s dignity and independence was enhanced. Respond to the following questions with as much detail as you can recall. •  •  •  •  •  •  • 

Who was involved? (Identify age, gender) Where did it occur? (Identify setting such as home, etc.) When did this occur? (Identify year, time) What was the situation or context? What happened? In your opinion, why was their dignity and independence enhanced? What did you do that made it so successful?

participant’s responses, an ending question was posed to elicit final thoughts (i.e., “What do you think are the most important things regarding your dignity and independence at this time as you live your life in this community?”).The interview guide was pretested with older adults prior to usage.

Process and Procedures Within the context of the PAR model, an advisory group was used in this study. The advisory group was comprised of 20 community members that leveraged key community-based providers, volunteers, experts, and stakeholders in aging. Membership included representatives from the leading agency on aging in the county, faith-based aging service providers, the local AARP (formerly known as the American Association of Retired Persons) chapter, elder law association, library system, arts group, university faculty and students, and lay members of the community that work with older adults in a variety of capacities. In addition, approximately one third of the group was comprised of older adults (age 65+). A total of five meetings were held with the advisory group members to collectively discuss the project throughout the yearlong process. Goals at the meetings included stimulating action based on collected data, setting the direction of future group work, collecting information about the process of changes needed, and developing a timeline. The advisory group was provided with ongoing analysis of the qualitative data as these were collected from October 2010 to January 2011. Prior to commencement, the research obtained Institutional Review Board approval (eIRB #00000213) from the University of South Florida, USA.

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Focus group participants were recruited from several sites throughout the community including the local senior center, senior residences, and libraries. Potential participants were individually contacted to ascertain interest and encourage participation. The interviews were offered conveniently at the respective sites. The interviews lasted between 1 and 1.5 hr. Participants were provided with informed consent agreements to participate. The seven sessions were audio taped. A marketing campaign was conducted by one of the community partners to recruit participants for the online survey. Multiple sources of outreach were used to promote participation in the study including mailing via listservs, postcards, blogs, and e-mail blasts. Focus group interviews were audio taped and the tapes transcribed and entered into ATLAS.ti (2003), a software program used for the management of textual data. Debriefing comments were made by the researcher after each interview to reflect upon the initial impressions of the interview and content discussed. A research team was used to analyze the data throughout the data collection process. The team was comprised of the coinvestigators along with several research assistants. Both researchers are gerontologists with extensive experience in qualitative methodology.

Data Analysis All transcribed tapes were double checked for accuracy by the coinvestigators. The transcripts were examined for significant and recurring themes using the grounded theory approach described by Strauss and Corbin (1998). This approach involved stages of coding or categorizing the qualitative responses. The transcripts were read several times by the research team and line-by-line open coding of the transcripts was performed independently by each researcher. A priori coding, or a start list of codes, consistent with the study’s focus was used during the preliminary analysis (Miles & Huberman, 1994). For example, initial coding included: matters most, good in community, not good in community, meaning of dignity and independence, and challenges and supports to dignity and independence. Subsequent reviews of the text allowed for clarification of coding categories. Themes relating across interviews were identified, and as a final check, each participant’s comments were reexamined verbatim to affirm coding or identify any uncoded data. Interrater reliability was conducted to assure agreement within the research team. Codes were clarified to account for any differences in independent coding. For example, socialization was further broken down by activities. The paradigm underlying the study is based on a reality-oriented perspective (Patton, 2002). This stance acknowledges the subjective construction of

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phenomenon, influenced by the researchers’ prior knowledge, beliefs, and experiences. Therefore, a variety of actions were taken to facilitate rigorous interpretation of the data. The credibility of the data was enhanced through a number of practices: (1) triangulation of data occurred by maintaining and recording events throughout data collection and analysis; (2) the use of a multidisciplinary research team (social gerontology, social work, and graduate students from different social behavioral and aging disciplines) involved in the data analysis and interpretation of themes; (3) multiple researchers analyzed the data independently; (4) researchers reviewed the findings at different stages of analysis; (5) the process of data collection was enhanced by careful documentation and organized record keeping so that data were maintained in retrievable and easily audited form by peers (Miller & Crabtree, 1999); (6) multiple modalities of qualitative methodologies; and (7) data were shared with older adults who participated in the interviews as a source of member checking to enhance trustworthiness of the data.

Findings A total of 484 persons participated in the study, including the community-based forums and online participation (n = 217) and qualitative inquiry (n = 261) approaches including seven focus groups and e-surveys. The community forums included 3 to 26 participants at each site and yielded 113 stories. Another 104 participants responded to the online “Share your Story.� The participants ranged in age from 12 to 96 (M = 57). The majority of respondents (39%) were middle aged (age 45 to 64), 13% young-adult (age 20 to 44), and approximately 10% were adolescent (age 12 to 19), with the remainder age 65 and older (38%). Respondents were invited to identify whether the story they intended to share was either personal (i.e., parent) or professional (i.e., health care worker). Among the respondents, more than half of the stories reported were identified as personal (n = 131), with a little more than a third (37%) reported from friends, neighbors, and social group connections, and about a third (30%) from spouse, adult child, and grandchildren. Among those reporting professional relationships with the older adult (n = 75), one half (50%) were from the health care or social service industry. The sociodemographic characteristics of the participants of the qualitative inquiry are listed in Table 2. As noted in the table, the participants ranged from young-old (age 65 to 74) to very old age (90+), and on average represented the middle-old age group (75 to 84; M = 76). The majority of the participants were female (75%), college-educated (57%), Caucasian (91%), and Christian (63%) that reflects the demographics of the community. As noted in the table, the participants otherwise represented a wide diversity of characteristics including marital status, living arrangement, health status, and income.

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Table 2. Sociodemographic Characteristics of Participants From Focus Groups and E-Survey (N = 267)

Characteristics

FG #1 FG #2

FG #3

FG #4 FG #5 FG #6 FG #7 FG total E-survey

n = 10 n = 10

n=9

n=8

n=4

n=5

n=5

N = 51

Age Mean 86.3 75.1 76.8 82.3 76.5 76.6 79.0 79.4 (range) (76-98) (65-91) (66-89) (72-93) (70-82) (71-85) (67-85) (65-98) Gender (%)  Female 60 60 100 100 100 80 80 80 Education (%)   Less than H.S. 0 10 43 29 25 0 0 15  H.S./GED 0 20 14 71 0 0 0 17   Some college 30 30 14 0 0 0 60 21   College degree 40 40 0 0 0 50 40 25   Post graduate 30 0 29 0 75 50 0 21 Religious affiliation  Protestant 40 50 12.5 37.5 100 40 40 42 0 40 0 37.5 0 40 40 22  Catholic  Jewish 60 0 0 0 0 0 0 12   No preference 0 10 12.5 0 0 20 20 8   Other religion 0 0 75 25 0 0 0 16 Hispanic (%) 12.5 10 0 12.5 0 0 0 6 Race (%)  White 100 100 0 100 100 100 100 83   African American 0 0 87.5 0 0 0 0 15  Other 0 0 12.5 0 0 0 0 2 Marital status Married (%) 10 40 11 0 50 80 20 26 Have children (%) 90 100 89 87.5 75 100 100 92 Living arrangement (%) 20 40 11 0 50 60 20 26   Live with spouse   Live with other 0 20 11 0 0 0 0 6   Live alone 80 40 78 100 50 40 80 68 Difficulty with activities of 0 0 22 37.5 0 0 0 14 daily living (%) 0 0 22 25 25 0 0 10 Difficulty with instrumental activities of daily living (%) Self-report health Meana 4.10 3.90 2.33 3.25 3.50 4.40 3.80 3.57 Currently work (%) 10 20 11 12.5 0 0 0 10 Currently drive (%) 80 100 67 57 75 100 100 82 Income (%)  <US$13,000 0 0 56 50 0 0 0 19   US$13,001- 26,000 0 43 22 50 50 0 0 23   US$26,001- 55,000 20 0 22 0 25 40 40 19  >US$55,000 80 57 0 0 25 60 60 39

N = 216 76 (65-96) 70 2 7 24 30 37 42 20 11 19 8 1 98 2 0 53 89 55 5 40 5 11

4 20 85 6 18 30 46

Note. Missing on any individual items ranged from 0 to 3. Percentages for each item are based on those who responded. a Self-report status of health ranges from 1 = poor to 5 = excellent. Downloaded from jag.sagepub.com at UNIV OF SOUTH FLORIDA on November 22, 2012


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Figure 2. Actionable themes: aging with dignity and independence initiative

Themes representative of all of the findings were synthesized and yielded six key topics, or “Actionable Themes,” which illustrate the intersect across the dual methods of the project (Figure 2). From a qualitative standpoint, the themes reveal the prominence and personal meanings associated with each thematic area. Moreover, the themes disclose the prevalence and importance of “microlevel,” or “person-to-person” interactions in maintaining and enhancing dignity and independence among community-dwelling older adults. In particular, the findings revealed that older adults, along with aging baby boomers on the precipice of old age themselves, represent a core social resource for other older adults in all thematic areas. As the final “Destiny” stage of the AI process, the themes identify opportunities for subsequent “mezzo-level,” or “person to organization,” and “macro-level,” or “broad-scale community,” actions that are poised to create wide-ranging enhancements to aging with dignity and independence throughout the community.

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Actionable Theme: Meaningful Involvement The importance of “making a difference” and “giving back” are part of what matters most and enhances dignity and independence according to the community participants. In the study, older adults reported that they wanted the freedom to personally choose areas of interests in which to become involved: “. . . having choices and having a voice.” The participants reported contributing in a variety of ways including utilizing their leadership and skills, and giving their time and energies to lifelong interests: “I have volunteered my whole life. I am involved in a lot of children’s organizations and still volunteer,” or newfound passions, “. . . the challenge of so many things that you never anticipated that you’d get into . . . you just never dreamed these things would come into your life.” Many acknowledged the freedom to pursue such involvements at this stage in their lives: “We all like to do a lot of things we didn’t have time to when (working) and doing other things.” According to the participants, involvement through such activities as volunteering, working, and teaching “enhances life” and provides a sense of meaning and purpose as well as fosters connections and relationships that support active aging and benefits the broader community. This sentiment was expressed by many participants and illustrated in the following comments: “Being active and a part of the community. Being an observer is not enough,” and “What matters to me most is giving back to this community.” Many participants derived a sense of meaning in helping “other older folks” navigate issues experienced in aging such as loss of a partner, deteriorating health, and caregiving. Participants described this camaraderie as having “a lot in common” and “similar in our life’s experiences” with other older adults which lead to better “understanding each other,” “because everyone goes through it.” In the poignant words of one participant: “The realization that illness and death are an integral part of life and are inevitable. I also have gained more compassion for others knowing we all walk the same walk.” Participants reported much personal pride in their activities and wanted to be respected for their contributions as well as ensure that their time and talent have meaning and value to others: “. . . appreciate the experience and ‘wisdom’ I have,” and “It is important to have a purpose to my living and that I am valued for my involvement.” Persons of all age groups throughout the broader community viewed older adults as “role models” and many expressed valuing the skills and passion that the elders brought to their community involvement: “She was determined that she was not going to feel sorry for herself, and that she was going to be the best that she could be, in order to preserve her mind, her health and her lifestyle, and she was a group leader in our discussions, encouraging others to do better.”

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Actionable Theme: Aging in Place Aging in place is of prime importance to growing older with dignity and independence according to participants in the study. Older adults reported that their dignity is based on self-reliance and “being self-sufficient and not becoming a burden on or dependent on others.” Yet many expressed concern about being able to remain at home. Health and financial factors accounted for much of the concern: “Wondering where I will be able to live when my money and health require another place . . .,” and “The economy has affected all of us. It’s harder and harder to survive financially . . . didn’t expect us to live as long as we’re living . . .” Others reported needing tangible assistance in order to continue to live independently: “My greatest concern is being able to take care of myself without depending on others.” Specifically, participants reported difficulties in completing housekeeping duties as well as the upkeep and maintenance of the home’s exterior and yard: “As we age we lose some of our ability to do the necessary things, even little things (like changing a light bulb in a high ceiling). We worry . . .,” and “I am afraid to climb a ladder to clean the gutters on my roof.” Participants also reported safety and trust concerns in inviting others to help in their homes: “I would like to know where I can get a handy man that I can trust to come into my home and do things we can no longer do.” Meeting needs for instrumental home maintenance was described as important because “simple modifications to remain independent [made one] feel much more self-reliant.” Positive actions that demonstrated support for aging in place among the broader community included many stories that “help them remain independent in their home.” Participants reported coordinating neighborhood efforts to provide lawn maintenance and helping elders manage daily needs such as medications to prevent side effects and hospitalizations that might lead to nursing home placement: “People in my neighborhood . . . still take care of themselves and their immediate surroundings until well into their 80s. We support them by doing the ‘heavy lifting’, helping them with the upkeep of their housing and yards. Making sure they have food, and interacting with them.”

Actionable Theme: Respect and Inclusion According to the participants, aging with dignity is enhanced by respectful behavior and social inclusion throughout the community: “Dignity is being recognized as a full adult who is due respect, whatever the physical condition or appearance.” Though many participants indicated positive interactions in general, many reported experiences of disrespectful interactions in a variety of encounters: “I think we’ve all experienced it, whether we are conscious of it all of the time or

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not, is when you get to a certain age bracket . . . but people do look at you as if ‘it’s time for you to be on the shelf,’ or worse yet, you’re taking up space.” Participants reported being judged on the superficial basis of hair color or slowed mobility: “Ageism is alive and active. Many people see either wrinkles, gray hair, or frailties and respond in a dismissive manner.” Participants cited that others assume they are incompetent due to vision or hearing difficulties or talked around as if the older adult is not present: “As I get older some folks treat me as less intelligent because I take more time to make decisions or actions. I do this because I know my reaction time has changed.” Many identified the net result of these interactions as condescending and patronizing: “As your faculties decline, so do others’ perceptions of you. Sometimes, it is just assumed they are declining because your hair is gray and you have some wrinkles. Condescension follows that perception.” Participants throughout the broader community shared many stories of treating older adults as “valued members of our community.” Positive actions that support or enhance aging with dignity and independence were intergenerational in nature and included proactively inviting participants into a range of new social networks as well as honoring the older adult’s desires in all areas of daily life decisionmaking: “My (older relative) shared with me that she felt very isolated but didn’t have the energy to ‘start over’ in her current retirement community even though she’d lived a very active and engaged life as a younger person. I racked my brain with how to ‘help’ her and realized the best thing I could do, would be to connect her with others, starting with my own circle and what I personally love about her– her personality, experience, and great spunky spirit. I brought my friend . . . to meet her, not thinking or talking about it like it was to visit my poor old (relative) . . . but to come meet my awesome (older relative) . . . They hit it off and it was a great joy for me to see the two interact, . . . to hear (her relative’s) stories and appreciate like I do what a wonderful woman she is.” Other stories shared focused on older peer to peer interactions: “Life is give and take . . . having convenient, meaningful opportunities . . . gives them reason to get up in the morning and know they will be appreciated today gives them independence. A community of people of the same, general age adds to the comfort level and the independence because there is someone that understands and is willing to help when needed and someone with whom to socialize.”

Actionable Theme: Communication and Information Access to information and resources is vital to aging with dignity and independence. Staying connected with events and activities and the ability to obtain timely, practical information to manage one’s life is necessary to meet daily

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personal needs. Yet many reported being unable to find information or are unaware of supportive services to assist aging in community: “Not knowing where to go for help . . . a barrier to independence.” Others reported receiving inaccurate, limited, or contradictory information about many resources: “I didn’t know that (organization) provided that.” Rapidly evolving information and communication technologies are seen as helpful by some and limiting by others: “I have found a lot of information that I have also passed on to others . . . you’ll be surprised on what’s available to you, but you got to get out there and ask for it.” Others reported feeling left behind by technology and discussed the consequences: “Some younger people think we are hopelessly behind with technology and they talk down to us sometimes,” and “The world can get smaller as we can get around less. It’s easy to see how I could feel left out of what matters—already technology is moving beyond me . . . It could become easy to feel forgotten.” Broader community-based actions that support or enhance aging with dignity and independence include assisting older adults in an internet search, making sense of care options and sharing links to resources: “I teach computer classes . . . more and more older adults are coming to . . . learn about computers—both to keep their minds active and for the socializing. When the students first start they are timid with the mouse. After being in the class . . . it is very rewarding to see that light go on when they have figured out how to use the mouse and what they can do on a computer. It is so rewarding to see older adults . . . get on a computer, check their portfolios, and connect with their families. They also have a sense of pride that technology has not left them behind.”

Actionable Theme:Transportation and Mobility “Continuing to be mobile” represents the key to independence for many participants. Although the overwhelming majority in the study reported still driving, anticipation about the future was regularly voiced: “I’m worried about what will happen when I can no longer drive.” Issues of safety in transportation and mobility were noted to be of prime importance to participants: “Being able to get around easily and safely.” Many identified current driving and traffic conditions as particularly difficult to navigate and worsening including “other drivers impatient with older drivers” and “drivers in control of a vehicle well past their ability to drive safely . . .” Public transportation options were described as costly and limited: “I live 2.5 miles from the nearest bus stop.” While others held strong misperceptions about public transportation: “Public transportation is ugly. Only the desperate use it,” and “. . . services will be available for me when I need them . . .”

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Pedestrian issues were also widely noted, with participants wanting their community “. . . designed for safe walking” with “amenities . . . close by.” However, pedestrians reported a lack of “walkability” which impacts physical activity and socialization as well as the ability to obtain necessary goods and services: “It really kind of bugs me that there are no (homes) where you can easily walk to the grocery stores, pharmacies, restaurants.” Some participants noted a sense of vulnerability when walking in their neighborhoods: “I’m like Cinderella, when I go out I have to make sure I’m home before dark.” Participants described self-reliance as the key to both their dignity and independence and indicated not wanting to burden or rely on others for assistance in meeting their transportation needs, yet many expressed concern about future socially isolation: “Without accessible public transportation, many people will live in isolation more because they won’t know who to ask, fear of rejection, and desire not to bother others. This will increase mental and physical decline,” and “It’s just beginning and I don’t like what I see for the future. I don’t drive as much or as far. My world is getting smaller.” Community members reported demonstrating support for the older adults’ dignity and independence by providing transportation, both urgent and recreational, and facilitating outings and activities to keep those without means, mobile, and connected: “They could rely on this transportation (volunteer drivers) every Sunday morning rain or shine . . .,” and “(older adult) lives alone, has (multiple medical conditions), and walks only with a walker very carefully within her small house. She was too weak to get out of the house . . . She insists on living in her home and likes her privacy, but was getting ‘cabin-fever’ and bored . . . got her out of the house and into the car, where we drove around . . . seeing all the new buildings, etc. She was so, so, SO happy! A car ride was all she needed, and she had many memories of that day to fill her days with during the following week.”

Actionable Theme: Health and Well-Being According to the participants, aging with dignity and independence is greatly impacted by one’s physical, social, and mental well-being. “Remaining active” was prominently cited by most participants and “staying healthy” was identified as the predominant way to continue to “live independently.” While numerous participants expressed that they have not yet experienced any serious challenges to their dignity or independence, others described a variety of health conditions and disabilities that adversely impact their lives: “When I was diagnosed with Alzheimer’s . . . I told everybody . . . so everybody knows I have it. If I had to do it over again, I’d tell . . . just a few of my close friends. Because

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people look at you differently . . . you just aren’t looked on as capable anymore . . .” For many, sensory deficits in vision and hearing impact their social wellbeing by limiting interaction with others: “I don’t hear that well and I have hearing aids, which don’t work really well . . . that’s a problem; when you hear people talk and you can’t hear them.” Others reported that deteriorating health and mobility affects self-care abilities, thereby increasing their dependence on others: “Not being able to take care of myself. Number one challenge to dignity.” Widowhood was widely reported as a particularly difficult time of adjustment: “It’s a very, very different way of life when you lose somebody who you’ve been married to for a long period of time, even though you know there was an illness prior. It’s very difficult to accept. You think you’re prepared and you’re not . . . it’s just so overwhelming.” Maintaining control in the course of end-of-life care was explicitly identified as an important aspect of dignity: “. . . being able to make decisions for myself such as accessing or choosing not to access intensive medical care,“ and “knowing I won’t die slowly and trying one means after another to give me days with no quality of life.” Positive stories shared by the broader community revealed the provision of both tangible and emotional support, which were highly valued and appreciated by older adults navigating health-related conditions and particularly at the end of life: “I with my husband’s help returned her to her home—I got help for her, and my husband did the food shopping—later as she aged, she became bed bound and we increased help. She also wanted a cat, which we did provide—and so she remained at home until she died, peacefully as she had hoped.”

Discussion Emanating from the AI framework, qualitative methods, and the PAR approach, this study has provided illuminating insights and potential utility for enhancing aging with dignity and independence among community-dwelling older adults. As previously noted, PAR and innovative methods of research such as AI are urgently needed in response to improve the aging experience for our nation’s expanding communities of older adults (Blair & Minkler, 2009; Emlet & Moceri, 2012). However, findings should be interpreted with several caveats in mind. First, the study was conducted in a moderately sized American city located in the Southeastern United States in which one third of the residents are aged 65 years and older. We aimed for, and our findings are proportionately representative of the residents’ sociodemographic characteristics across a range of variables. Consequently as a result of our aim, and due to the multiple methodologies

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employed, we do not explore differential perceptions and experiences by such variables as gender, race, socioeconomic status, and genetics. Indeed, factors impacting aging with dignity and independence in one’s community depend on a multitude of individual factors, and relative to each community as well. For example, women, and particularly minority women, experience greater disadvantage at older ages as a result of cumulative lifelong social and economic inequities (Gonyea & Hooyman, 2005). As a result of broader social, political, and environmental influences, older persons with health impairments and limited mobility are also marginalized by society (Holstein & Minkler, 2003). The oldest old (age 85 and older) are particularly vulnerable to minimization as American society continues to devote preferential attention toward the culturally dominant younger and healthier age cohort (Jacoby, 2012). Though applicable to many older adults and communities throughout in United States, our study’s findings should be interpreted within this tempered and relativistic view. Despite these limitations, this study yielded six actionable themes that represented both extant “micro-level” interactions that enhance aging in the community as well as multiple novel ideas for both “mezzo” and “macro-level” interventions. Foremost, the study discovered the prevalence and value of “microlevel” interactions such as the seemingly obvious, yet not well-recognized importance and contributions of older adults themselves as core social resources in community aging. Indeed, older adults were also well represented and participated throughout all stages of the study. Throughout all of the themes, older adults expressed ways in which they enhance dignity and independence for their own contemporaries. The older adults’ described a sense of camaraderie and connection that promoted this natural helping network. Aging baby boomers on the cusp of their own “later-age stage” in life also reported many positive stories that enhanced dignity and independence among older adults. These findings suggest that older adults represent an important social resource for aging in community. Although research suggest that not all young-old are supportive when interacting with older-old adults (Roth et al., 2012), many locales will surely benefit from the innumerable ways in which their own elder demographic could be mobilized to assist in the transformation necessary to facilitate growing older well in their respective communities. The study also revealed possibilities to greatly enhance aging with dignity and independence on the “mezzo” or “person to organization” level via innovative approaches that enhance the aging experience for all elders. For example, current health and social service programs serving older adults in community settings are often limited by economic eligibility, severity of need, or lack of funds. Consequently, existing programs are aimed at secondary layers of intervention, that is, responding to those with advanced needs to prevent higher costs

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of tertiary care such as nursing home placement. In contrast, this study was deliberately designed to capture the voice and identify the themes across a wide diversity of older adults residing in the community. Thus, the actionable themes are inclusive to all older adults aging in community and applicable to persons representing a wide range of sociodemographic characteristics. Consequently, the findings provide a refreshing take on actions that enhance aging that can be described as “primary level interventions” or “preventative” in approach and include potential partnering with the indigenous older adult helping networks that already exist. For example, the aging in place actionable theme suggests helping older adults to maintain upkeep of their home before they are unable to manage at home. Our study revealed that many neighbors and neighborhoods, and particularly older adults themselves, do in fact assist older adults to upkeep and remain in their homes. In contrast, current public services aimed to keep people at home largely focus on those who meet limited eligibility. Instead, organizations could reach out to mobilize the natural helping networks to augment the existing health and social service delivery system of care in a broader capacity. That is, organizations building on community efforts to assist aging in place would go far beyond the scope of any singular provider mandate that focuses on limited organizational provisions, such as assistance with home energy costs. Further mobilizing such efforts is likely to garner multiple benefits that will facilitate aging in place and augment the service delivery net that exists. We believe these approaches are particularly apropos in light of these austere times. As the nation experiences a prolonged recession, major governmental cutbacks in services to older adults, and growing needs, any efforts to assist older adults in maintaining dignity and independence as they age will surely be viewed as welcome relief. Additional organizational opportunities to enhance aging with dignity and independence are found among other themes as well. For example, the meaningful involvement theme highlights the importance of involving older adults in activities that are significant to one’s own autonomy. Implications here suggest that organizations that utilize older volunteers should be given choice in their work, allowed to provide their skills, or exposed to areas of interest to them (and not merely based on agency or organizational needs), as well as recognized for their work and not marginalized for their efforts. Volunteer researchers illustrate similar findings and also suggest older adults perceive more benefits from volunteering when their volunteer roles are flexible (Morrow-Howell, Hong, & Tang, 2009; Tang, Choi, & Morrow-Howell, 2010) and they are recognized for their efforts (Tang, Morrow-Howell, & Hong, 2009). Moreover, areas of meaningful involvement for many in the study were focused on helping other older adults navigating their own aging journeys.

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Also building on the mobilization of older adults, the study’s actionable themes are ripe for “macro-level” community-based actions. For example, the transportation and mobility theme underscore the importance of developing lower cost and alternative transportation options and recognize that older adults themselves appear to be taking active roles in assisting others in this area. Mobility concerns such as the “walkability” of neighborhoods to secure needed goods provides important feedback to plan for nearby amenities and think creatively about options to meet current needs. Recent research has in fact identified that successful advocacy for community design, housing, and transportation innovations by local government include the involvement of older residents (Lehning, 2011). The Lifelong Communities Initiative, a CPFOA grantee serving the metropolitan area of Atlanta, included the voices of older adults to address concerns regarding transportation deficits and was thereby able to create a transportation voucher program and incorporate older pedestrians’ needs into city renewal plans. In addition, community members established walking clubs and were integral in mapping walking and bike trails (Lawler & Berger, 2009). The communications and information actionable theme highlighted the importance about connecting people to helpful resources in a variety of ways. A commendable example of connecting individuals to resources by using community partnerships and consolidating resources is the Care for Elders Partnership. This program persuaded five information and referral sources to provide content to a sole electric resource database for older adults (Bolda, Saucier, Maddox, Wetle, & Lowe, 2006). The theme also identified the important role that older adults already perform in connecting their peers to information and resources. The importance of connecting others to needed information through others who can provide firsthand experience and feedback about the services is viewed as particularly relevant and valuable to older adults. As we learned in our study, health and well-being represent key goals for older adults and holistic views on the intersecting mental, physical, and social needs of older adults should be foremost consideration in all endeavors to promote aging well in one’s community. The key issues faced by older adults and those persons and groups of persons most helpful to older adults further represent the unique contributions that older adults can make in this regard. As noted throughout the findings, this study suggests that older adults are already serving and particularly well suited to assist others experiencing similar experiences in life, and in fact, are greatly appreciated. Community-based efforts to mobilize older adults will clearly be useful, possibly essential, and perhaps, ultimately indispensable to transform communities moving forward. Again, expanding our focus on older adults, inclusive of the broader community, and building upon the social resource assets of older adults themselves, is likely to

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yield very productive and satisfying activities and outcomes for older adults aging in community. Such approaches should be most welcome for communities seeking to proactively respond to their own burgeoning growth of older residents.

Acknowledgements The authors wish to acknowledge the assistance of Ms. Linda Rooney, a graduate student at the School of Aging Studies at the University of South Florida, who participated in the independent coding of the data. Undergraduate student Charlene Monagas at the University of South Florida at Sarasota-Manatee assisted in the entry of the data from written surveys. Ms. Suzanne Gregory from SCOPE, Sarasota, Florida assisted in uploading the studyâ&#x20AC;&#x2122;s questions into Survey Monkey. The authors also wish to acknowledge the impetus and importance of the idea, which stemmed from Mrs. Dorothy Patterson and was realized through Debra Jacobs, President and CEO of The Patterson Foundation. Tim Dutton, also from SCOPE, was also greatly appreciated in his helpful role as the projectâ&#x20AC;&#x2122;s initiative manager.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by The Patterson Foundation, Sarasota, Florida.

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Robert Wood Johnson Foundation’s Community Partnerships for Older Adults Program. The Gerontologist, 46, 391-397. doi:10.1093/geront/46.3.391 Boston Partnership for Older Adults. (2003). 100,000 voices on growing older in Boston. Retrieved from www.ethocare.org/bpoa/pdf/voices.pdf Browdie, R. (2011). The future of aging services in America. Generations, 34(3), 56-60. Care for Elders. (2004). Meeting the long-term care challenge: A strategic plan for addressing the needs of older adults and family caregivers in Harris county. Retrieved from careforelders.org/files/DDF/00000149.pdf Ciechanowski, P., Wagner, E., Schmaling, K., Schwartz, S., Williams, B., Diehr, P., Kulzer, J., Gray, S., Collier, C., & LoGerfo, J. (2004). Community-integrated home-based depression treatment in older adults. JAMA: The Journal of the American Medical Association, 291(13), 1569-1577. doi:10.1001/jama.291.13.1569 Doyle, M., & Timonen, V. (2010). Lessons from a community-based participatory research project: Older participants’ and researchers’ reflections. Research on Aging, 32, 244-263. Emlet, C. A., & Moceri, J. T. (2012). The importance of social connectedness in building age-friendly communities. Journal of Aging Research, 2012, 9. doi:10.1155/2012/173247 Federal Interagency Forum on Aging Related Statistics. (2010). Older Americans: Key indicators of well-being. Federal Interagency Forum on Aging Related Statistics. Washington, DC: U.S. Government Printing Office. Germain, C. B., & Gitterman, A. (1980). The life model of social work practice. New York, NY: Columbia University Press. Greenfield, E. A. (2011). Using ecological frameworks to advance a field of research, practice, and policy on aging-in-place initiatives. The Gerontologist, 52(1), 1-12. Gonyea, J. G., & Hooyman, N. R. (2005). Reducing poverty among older women: Social security reform and gender equity. Families in Society, 86, 338-346. Holstein, M. B., & Minkler, M. (2003). Self, society, and the “new gerontology.” The Gerontologist, 43, 787-796. Israel, B. A., Schulz, A. J., Parker, E. A., Becker, A. B., Allen, A. J., & Guzman, J. R. (2008). Critical issues in developing and following community based participatory research principles. In M. Minkler & N. Wallerstein (Eds.). Communitybased participatory research for health (pp. 46-66). San Francisco, CA: JosseyBass. Jacoby, S. (2012). Never say die: The myth and marketing of the new old age. New York, NY: Vintage. Lawler, K., & Berger, C. (2009). Lifelong communities: Re-imagining the Atlanta region from the ground up. Generations, 33(2), 76-78.

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Lehning, A. J. (2011). City governments and aging in place: Community design, transportation and housing innovation adoption. The Gerontologist, 52, 345-356. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis. Thousand Oaks, CA: SAGE. Miller, W. L., & Crabtree, B. F. (1999). Doing qualitative research (2nd ed., pp. 333-347). Thousand Oaks, CA: SAGE. Morrow-Howell, N., Hong, S.-I., & Tang, F. (2009). Who benefits from volunteering? Variations in perceived benefits. The Gerontologist, 49(1), 91-102. doi:10.1093/ geront/gnp007 Patton, M. Q. (2002). Qualitative research & evaluation methods. California, CA: SAGE. Robert Wood Johnson Foundation. (2009).Community Partnerships for Older Adults. Princeton, NJ. Roth, E. G., Keimig, L., Rubinstein, R. L., Morgan, L., Eckert, J. K., Goldman, S., & Peeples, A. D. (2012). Baby boomers in an active adult retirement community: Comity interrupted. The Gerontologist, 52, 189-198. Stewart, S. (2003). “A tapestry of voices”: Using elder focus groups to guide applied research practice. Journal of Gerontological Social Work, 42(1), 77- 88. Strauss, A., & Corbin, J. (1998). Basics of qualitative research. Techniques and procedures for developing grounded theory. San Francisco, CA: SAGE. Steeman, E., De Casterlé, B. D., Godderis, J., & Grypdonck, M. (2006). Living with early-stage dementia: A review of qualitative studies. Journal of Advanced Nursing, 54, 722-738. Tang, F., Choi, E., & Morrow-Howell, N. (2010). Organizational support and volunteering benefits for older adults. The Gerontologist, 50, 603-612. Tang, F., Morrow-Howell, N., & Hong, S. (2009). Inclusion of diverse older populations in volunteering. Nonprofit and Voluntary Sector Quarterly, 38, 810-827. Teufel-Shone, N., & Williams, S. (2010). Focus groups in small communities. Preventing Chronic Disease: Public Health Research, Practice, and Policy, 7(3), 1-6. U.S. Code. (1965). Older Americans Act. Title 42, chapter 35, subchapter S 3001. U.S. Department of Health and Human Services. (2012). Administration for community living. Retrieved from http://www.hhs.gov/acl/ U. S. Government Accounting Office (2011). Income Security: Older Adults and the 2007-2009 Recession: A Report to the Chairman, Subcommittee on Primary Health and Aging, Committee on Health, Education, Labor and Pensions, U.S. Senate. Report #12-76. Washington, DC. Vincent, G. K., & Velkoff, V. A. (2010). The next four decades: The older population in the United States: 2010 to 2050 (Report No. P25-1138). Washington, DC: United States Census Bureau.

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Bios Kathy Black, PhD (Social Welfare, State University of New York at Albany, 2000), is a Hartford Geriatric Social Work Faculty Scholar and an associate professor of social work and gerontology at the University of South Florida Sarasota-Manatee. Her research focuses on end-of-life care planning, geriatric mental health, health care professional communication, intergenerational practice and aging in place. Debra Dobbs, PhD (Sociology, University of Kansas, 2002), is an associate professor and affiliate member of the Florida Policy Exchange Center on Aging at the University of South Florida, School of Aging Studies. Her research interests include issues related to palliative and hospice care, in long-term care, residential care, and home and community-based settings. Tiffany L. Young, MA (Gerontology, Georgia State University, 2009), is a doctoral student in School of Aging Studies at the University of South Florida. Her research agenda focuses on developing and evaluating intergenerational community-based programs as a means to mitigate issues afflicting community members of all ages.

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Profile for The Patterson Foundation

Aging in Community: Actionable Themes  

Themes around aging with dignity and independence in a community derived from community-based participatory research.

Aging in Community: Actionable Themes  

Themes around aging with dignity and independence in a community derived from community-based participatory research.

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