Journal of Gerontological Nursing

Person-Centered Care 

National Priorities for Dementia Care: Perspectives of Individuals Living with Dementia and Their Care Partners

Davina Porock, PhD, RN; Louanne Bakk, PhD; Suzanne S. Sullivan, MBA, BSN, RN, CHPN; Karen Love; Jackie Pinkowitz, MEd; Sonya Barsness, MSG

Abstract

The current article reports the consensus recommendations from individuals living with dementia and their care partners on priorities for public policy and research funding, which were found using a nationwide, Delphi study. A modified snowball sample was used. Listservs, personal contacts, and advocacy groups were asked to distribute the survey. Paper versions were provided upon request. In Rounds 1 and 2 of the study, 388 and 301 responses, respectively, were received. Borda counts produced a ranked order consensus of priorities. Research ranked third, after the need for caregiver support and resources for the provision of long-term care. Education and training in person-centered practices for all care partners was also a high priority. Responses indicated that research funding should be expanded beyond its current emphasis on cure. Policymakers should reconsider the current priorities of the National Alzheimer’s Project Act to better address the long-term needs of individuals living with dementia and their care partners. [Journal of Gerontological Nursing, 41(8), 9–16.]

Dr. Porock is Professor and Associate Dean for Research and Scholarship, Director, Center for Nursing Research, and Director, UB Institute for Person-Centered Care, and Ms. Sullivan is PhD Student, School of Nursing, University at Buffalo, Buffalo, New York; Dr. Bakk is Assistant Professor and Director, Institute on Innovative Aging Policy and Practice, School of Social Work, University at Buffalo, Buffalo, New York; Ms. Love is Founder, CCAL-Advancing Person-Centered Living, Falls Church, Virginia; Ms. Pinkowitz is Board Chair, CCAL-Advancing Person-Centered Living, Colts Neck, New Jersey; and Ms. Barsness is Director, Sonya Barsness Consulting LLC, Norfolk, Virginia.

The authors have disclosed no potential conflicts of interest, financial or otherwise. This work was supported by the Retirement Research Foundation (grant 2013-241).

Address correspondence to Davina Porock, PhD, RN, Professor and Associate Dean for Research and Scholarship, Director, Center for Nursing Research, and Director, UB Institute for Person-Centered Care, School of Nursing, University at Buffalo, 101C Wende Hall, 3435 Main Street, Buffalo, NY 14214-8013; e-mail: dporock@buffalo.edu

Abstract

The current article reports the consensus recommendations from individuals living with dementia and their care partners on priorities for public policy and research funding, which were found using a nationwide, Delphi study. A modified snowball sample was used. Listservs, personal contacts, and advocacy groups were asked to distribute the survey. Paper versions were provided upon request. In Rounds 1 and 2 of the study, 388 and 301 responses, respectively, were received. Borda counts produced a ranked order consensus of priorities. Research ranked third, after the need for caregiver support and resources for the provision of long-term care. Education and training in person-centered practices for all care partners was also a high priority. Responses indicated that research funding should be expanded beyond its current emphasis on cure. Policymakers should reconsider the current priorities of the National Alzheimer’s Project Act to better address the long-term needs of individuals living with dementia and their care partners. [Journal of Gerontological Nursing, 41(8), 9–16.]

Dr. Porock is Professor and Associate Dean for Research and Scholarship, Director, Center for Nursing Research, and Director, UB Institute for Person-Centered Care, and Ms. Sullivan is PhD Student, School of Nursing, University at Buffalo, Buffalo, New York; Dr. Bakk is Assistant Professor and Director, Institute on Innovative Aging Policy and Practice, School of Social Work, University at Buffalo, Buffalo, New York; Ms. Love is Founder, CCAL-Advancing Person-Centered Living, Falls Church, Virginia; Ms. Pinkowitz is Board Chair, CCAL-Advancing Person-Centered Living, Colts Neck, New Jersey; and Ms. Barsness is Director, Sonya Barsness Consulting LLC, Norfolk, Virginia.

The authors have disclosed no potential conflicts of interest, financial or otherwise. This work was supported by the Retirement Research Foundation (grant 2013-241).

Address correspondence to Davina Porock, PhD, RN, Professor and Associate Dean for Research and Scholarship, Director, Center for Nursing Research, and Director, UB Institute for Person-Centered Care, School of Nursing, University at Buffalo, 101C Wende Hall, 3435 Main Street, Buffalo, NY 14214-8013; e-mail: dporock@buffalo.edu

In 2011, the National Alzheimer’s Project Act (NAPA; 2011) was signed into law. A key provision of NAPA required the creation of an advisory council comprised of federal and non-federal representatives involved in aging issues. One of the tasks set by the advisory council involved the development of recommended priorities needed to prepare the United States to meet the needs surrounding Alzheimer’s disease and related dementias (U.S. Department of Health and Human Services [USDHHS], 2014). Although most of the five goals forming the National Plan are oriented on aspects of care (e.g., quality of care, access to needed supports and services, advocacy and public education), the majority of the plan’s emphasis and resources are directed toward cure and treatment. In 2014, more than $100 million was allocated to science and drug development and $10 million to care, services, and education (USDHHS, 2014). The Alzheimer’s Association (2014) estimates that more than 5 million people have Alzheimer’s disease; this represents less than $2 per person for care-related support from NAPA. It is critical to find cures and medicines for Alzheimer’s disease and related dementias. However, are these the priorities of individuals and families living with dementia? Their voices have not been heard over the clamor for research dollars to cure Alzheimer’s disease.

The current study was part of a larger project to develop a national advocacy group, the Dementia Action Alliance, providing an opportunity for individuals living with any type of dementia and their care partners to contribute to the national debate and National Plan. The study sought to obtain a consensus of recommendations from individuals living with dementia and their care partners on priorities for public policy and where research funded by public dollars should be directed. The data in the study were presented as a public comment at the NAPA council meeting in July 2014.

Method

A two-round Delphi technique was used to gain consensus from a geographically spread panel of individuals living with dementia, their care partners, and supporters. The Delphi technique offers a number of advantages, including the ability to (a) obtain geographically spread experts; (b) avoid the dominance of any one voice or group; and (c) have multiple rounds, allowing participants to view other opinions. The method was first devised by the Rand Corporation in the 1950s to garner opinions of experts to forecast technological developments in military and marketing (Fink, Kosecoff, Chassin, & Brook, 1984; Rand Corporation, 2015). In health sciences, the technique has been adapted to gain consensus among experts around priorities for research and education (Jones & Hunter, 1995; Keeney, Hasson, & McKenna, 2006; Tolson, Maclaren, Kiely, & Lowndes, 2005; Walker & Selfe, 1996). Although the method has been used predominantly with professionals who are specialists in their subject matter, in the current study, the authors recognized that the individuals living with dementia and their supporters were the experts in this experience.

Sample

A modified snowball sampling strategy was used. Two distinct groups with important perspectives and knowledge about person-centered dementia care were the primary contacts for disseminating the online survey: (a) two grass-roots dementia advocacy groups and (b) 27 national organizations that advocate for individuals living with dementia and their care partners. These groups were asked to disseminate the survey to their members and networks. In addition, e-mail networks from the project team, listservs, and personal contacts were used to distribute the SurveyMonkey® link to as many individuals living with dementia and their care partners as possible. The same organizations, contacts, and networks were used for Round 2. Questionnaires were also mailed with postage-paid return envelopes and one participant telephoned to give his response. Responses were entered into SurveyMonkey by one of the researchers (S.S.). In Round 1, 388 individuals participated, and in Round 2, 301 individuals participated. Participants had a diagnosis of dementia (including Alzheimer’s disease) or were supporting an individual living with dementia.

Approval to conduct the study was obtained from the University at Buffalo Institutional Review Board for Social and Behavioral Sciences. Consent to participate was included on the initial screen of the SurveyMonkey link. No identifying information was gathered.

Analysis

Two rounds of the Delphi were performed using a survey available online or on paper. In Round 1, participants were asked to state what they perceived as the needs of individuals living with dementia and their supporters and to identify priorities for government policy and publicly funded research. A simple content analysis was conducted and responses were grouped into thematic areas for potential priorities.

In Round 2, participants were asked to rank the identified topics that emerged in terms of importance. This round resulted in a more complex task of responding to 11 topic areas in two major groupings: (a) priorities for government and (b) priorities for research. Each grouping began by ranking the categories followed by ranking of topics within categories.

For Round 2, calculation of consensus ranking was performed using a voting system referred to as a Borda count, a single-winner election method in which voters rank options in order of preference (Saari, 2008). The Borda count determines the outcome by giving each candidate points corresponding to the number of candidates ranked lower. Once all votes have been counted, the candidate with the least points is the winner. This may seem counterintuitive but ranking the top option as 1 (or first) and the least favored option as 5 (or fifth) results in the lower numbers representing the highest preference.

Demographics from each round are shown in Table 1. Table 2 reports what relationships the respondent had/has with an individual living with dementia. To overcome response problems from SurveyMonkey, the authors used the number of responses rather than the number of participants as the denominator.

Participant Demographics

Table 1:

Participant Demographics

Key Relationships With Individuals Living with Dementia as a Percentage of the Study Sample

Table 2:

Key Relationships With Individuals Living with Dementia as a Percentage of the Study Sample

Results

The analysis from Round 1 provided a wealth of ideas and revealed the burdens, both emotional and financial, which beset the participants. The authors focused the analysis on two questions that specifically asked participants for federal government priorities and research priorities to create the items for the Round 2 ranking. The results provided 11 sets of statements for ranking. Each set had between three and six statements; the majority had five.

After calculating the Borda count for each set, the authors produced a ranked order of preference for prioritizing each topic area based on the consensus views of participants. Table 3 and Table 4 detail the Borda count and final ranking. After each set of rankings, participants were given the opportunity to comment. Common to all of the comments was the difficulty for participants in choosing between the statements.

Federal Government Priorities Identified by Study ParticipantsFederal Government Priorities Identified by Study Participants

Table 3:

Federal Government Priorities Identified by Study Participants

Research Priorities Identified by Study Participants

Table 4:

Research Priorities Identified by Study Participants

The results appear in the order presented in the survey. The first section of each table indicates the ranking of each priority area, including research, providing the overall importance of each issue. This section is followed by the detailed rankings within each issue with the government priorities first and then the research priorities.

The current study’s findings indicate that research is important to individuals living with dementia and their supporters. However, research (both cure- and care-related) is ranked third, after the need for support for caregivers and resources providing long-term care. If the National Plan followed the order of priorities identified in this survey, funding would be allocated as:

  1. Financial and other resources to support caregiving.

  2. Financial and other resources to support long-term care and aging in place.

  3. Research for cure and care.

  4. Person-centered education and training for families, health professionals, nursing aides, and volunteers.

  5. Advocacy and awareness to reduce the stigma of dementia.

For the research agenda, priorities would be more diverse, including a multitude of care issues that were raised. Most individuals want a cure or a means of preventing dementia to be found. The reality of this occurring by the 2025 deadline was not supported. As one participant wrote:

I have known for a long time that there will be no cures in my lifetime. Maybe in my children’s, not sure now, not even sure if in my grandchildren’s. So there has to be some more emphasis/support/help for caregivers, and some way has to be found to pay for care in home. Facilities in my area are costing $10,000 per month. No way is this affordable.

The specific priority areas for research were as follows:

  1. Cure, prevention, and treatment.

  2. Caregiving, including person-centered care, family caregivers, and workforce issues.

  3. Education and training, including for the individual with dementia, families, workforce, and the public.

  4. Quality of life, including the impact of dementia on the whole family.

  5. Complementary therapies, including supplements, remedies, and alternative treatments.

  6. Care settings and environments, including the home, long-term care facilities, day care, and hospitals.

Discussion

The current study sought to obtain consensus on issues related to dementia from the individuals most affected—those living with dementia, their care partners, and supporters. Dementia, including Alzheimer’s disease, is a complex, chronic condition that impacts every aspect of life. The biomedical approach, which views dementia as neurodegenerative pathology alone, has been rejected worldwide by dementia advocates (Batsch & Mittelman, 2012; Prince, Prina, & Guerchet, 2013). The person-centered approach to health care recognizes that health and well-being are contingent upon more than the physical condition and include psychosocial–spiritual dimensions (Kohn, Corrigan, & Donaldson, 2001). The need to recognize the entire impact on individuals, as well as the impact of caregiving for family members, professionals, and their communities, has also been highlighted worldwide (Batsch & Mittelman, 2012; Prince et al., 2013; Wortmann, 2013). Significant policy documents have emphasized the necessity of taking a person-centered approach (Centers for Medicare & Medicaid Services, 2012), but this is not reflected in the National Plan (Kohn et al., 2001; Wortmann, 2013). Dementia care experts across the country are concerned about the current direction of the National Plan, specifically: (a) language too narrowly focused on Alzheimer’s disease and not more globally on dementia; (b) too much emphasis on the “cure” and too little on the “care” for individuals living with dementia; and (c) the Plan’s silence on what is considered the gold standard, person-centered practices (Love & Pinkowitz, 2013).

Person-centered approaches to care, including how to educate and train professional and family caregivers on these approaches, was a need made clear throughout the responses. Putting the individual and family living with dementia at the center of all care practices, policy, and research was a repetitive theme. Thus, findings suggest that current federal priorities be reexamined to provide for and adequately address the care needs of individuals living with dementia and their care partners.

Participants were also clear that not all research funding should be focused on cure. That so many research ideas were generated indicates the scope of work needed to produce a strong evidence base for practice/services. Without rigorous research, the ability to develop effective interventions on community, regional, state, or even national levels is nearly impossible.

Limitations

Ideally, the study would have taken place over a longer period, making possible a third round to increase clarity of priorities and add participants, particularly those living with dementia. The electronic communication and online form may have limited participation. However, little evidence exists on how best to engage individuals with dementia in research. Alternatives for engaging primary stakeholders must be considered for future research. However, adhering to this timeframe and communication format made it possible to present the findings at the NAPA council meeting in July 2014. Despite the limitations, the authors succeeded in engaging individuals living with dementia, care partners, and direct caregivers from more than 30 U.S. states. More than 300 participants were included in each Delphi round, with more than 90% completing part of the survey.

Implications for Nursing Practice

The needs of individuals living with dementia and their care partners are great. The current study findings were supported by the parallel study by the Rand Corporation (Shih, Concannon, Liu, & Friedman, 2014) that, despite limited engagement with individuals living with dementia, found the same results. In addition to all the ideas generated by the current survey, there was a clear call for action.

Nurses and other health professionals are well positioned to take action as individuals on a daily basis and as a professional group to initiate many of these priorities. They are among the first to come in contact with individuals and families living with dementia who are in need of resources and support. Advocacy and education regarding the need for greater consideration of the priorities of individuals with dementia rest squarely within the nursing profession and are essential to improving the quality of life for individuals and families. Person-centered practice considers the whole person and family, keeping their interests, values, relationships, and aspirations at the center of life and care. Currently, care is organized more around the convenience of the system or organization rather than the person receiving it. As the Eden Alternative Principle 7 states: “Medicine should be the servant of genuine human caring, never its master” (Eden Alternative Principles, 2012).

For nurses and all health professionals, specialist skills are essential to sustain personhood through interaction and purposeful activity as this helps retain meaning in life. It is not just about being nice. Person-centered practice requires a complex communication skill set delivered with empathy and creativity. McCormack and McCance’s (2010) theory on person-centered nursing provides a framework for promoting these high-level interpersonal and organizational competencies. By role modeling these behaviors, health professionals can lower stress for the individual and family living with dementia while promoting awareness and reducing stigma more generally. As indicated in the current study, staff and family education and practice development are critical to achieving these goals. Whether the individual living with dementia is at home or in a long-term community living setting, placing the individual at the center of care provides a way to meet all their needs and goals on a daily basis. Using this approach also has the potential to lower long-term care costs because individuals and families are equipped with the resources needed to support aging in place.

Conclusion

Currently, the majority of federal resources are dedicated to finding cures and treatments for Alzheimer’s disease. Although these are important objectives, results of the current study align with previous research indicating that person-centered dementia care is an even higher priority. Findings suggest that policymakers reconsider the current priorities of NAPA to better address the long-term care service and support needs of individuals living with dementia and their care partners.

References

  • Alzheimer’s Association. (2014). 2014 Alzheimer’s disease: Facts and figures. Retrieved from http://www.alz.org/downloads/facts_figures_2014.pdf
  • Batsch, N.L. & Mittelman, M.S. (2012). World Alzheimer report 2012: Overcoming the stigma of dementia. Retrieved from http://www.alz.org/documents_custom/world_report_2012_final.pdf
  • Centers for Medicare & Medicaid Services. (2012). Request to convey information: Partnership to improve dementia care in nursing homes. Retrieved from http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertificationGenInfo/Policy-and-Memos-to-States-and-Regions-Items/Survey-and-Cert-Letter-12-42.html
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  • Fink, A., Kosecoff, J., Chassin, M. & Brook, R.H. (1984). Consensus methods: Characteristics and guidelines for use. American Journal of Public Health, 74, 979–983. doi:10.2105/AJPH.74.9.979 [CrossRef]
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  • McCormack, B. & McCance, T. (2010). Person-centred nursing: Theory, models and methods. Oxford, UK: Blackwell. doi:10.1002/9781444390506 [CrossRef]
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  • Shih, R.A., Concannon, T.W., Liu, J.L. & Friedman, E.M. (2014). Improving dementia long-term care: A policy blueprint. Santa Monica, CA: Rand Corporation.
  • Tolson, D., Maclaren, W., Kiely, S. & Lowndes, A. (2005). Influence of policies on nursing practice in long-term care environments for older people. Journal of Advanced Nursing, 50, 661–671. doi:10.1111/j.1365-2648.2005.03451.x [CrossRef]
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  • Wortmann, M. (2013). Overcoming the stigma of dementia. Alzheimer’s & Dementia, 9, P547. doi:10.1016/j.jalz.2013.04.308 [CrossRef]

Participant Demographics

CharacteristicRound 1 (n, %)Round 2 (n, %)
Gender(n = 233)(n = 250)
  Female202 (86.7)212 (84.8)
  Male31 (13.3)38 (15.2)
Age (year)(n = 229)(n = 245)
  18 to 2910 (4.4)14 (5.7)
  30 to 3915 (6.5)18 (7.3)
  40 to 4936 (15.7)36 (14.7)
  50 to 5976 (33.0)78 (31.8)
  60 to 6965 (28.3)76 (31)
  70 to 7925 (10.9)19 (7.8)
  80 to 892 (0.9)4 (1.6)
Race/ethnicity(n = 234)(n = 249)
  Caucasian212 (91.4)226 (90.8)
  African American8 (3.4)4 (1.6)
  Hispanic5 (2.2)5 (2.0)
  Asian2 (0.9)5 (2.0)
  Other/declined7 (3.0)9 (3.6)

Key Relationships With Individuals Living with Dementia as a Percentage of the Study Sample

RelationshipRound 1 (n, %)Round 2 (n, %)
Current(n = 166)(n = 162)
  Parent52 (31.3)59 (36.4)
  Spouse/partner22 (13.3)28 (17.3)
  Friend38 (22.9)33 (20.4)
  Sibling12 (7.2)8 (4.9)
  Grandparent8 (4.8)7 (4.3)
  In-law9 (5.4)7 (4.3)
  Aunt/uncle5 (3.0)3 (1.9)
  Self12 (7.2)8 (4.9)
  Other8 (4.8)9 (5.6)
Past(n = 212)(n = 190)
  Parent64 (30.2)62 (32.6)
  Spouse/partner5 (2.4)6 (3.2)
  Friend38 (17.9)29 (15.3)
  Sibling7 (3.3)2 (1.1)
  Grandparent53 (25.0)51 (26.8)
  In-law21 (9.9)13 (6.8)
  Aunt/uncle11 (5.2)13 (6.8)
  Other13 (6.1)14 (7.4)

Federal Government Priorities Identified by Study Participants

PrioritiesBorda CountaRank Order
Overall Priorities
Prioritize caregiver support—financial compensation for caregivers, respite, case management, counseling6441
Prioritize long-term care needs (care provided in-home, community, and institutional settings; workforce issues; regulations; and long-term care facilities)6482
Prioritize research involving medical factors, social factors, technological approaches to care, alternative approaches to care7223
Prioritize education and training for formal and informal caregivers, families, community, staff, workforce7444
Prioritize advocacy and awareness about dementia—public education campaigns, aging in place, adequate funding1,0575
Education and Training
Skills training for care partners/caregivers/families (e.g., communication, care, using a person-centered approach)5881
Skills training for workforce (health care workers: nursing home and hospital staff, public agency workers, home care workers)6432
Provide training incentives to increase the number of individuals skilled in working with individuals with dementia (e.g., physicians, nurses, social workers, occupational and physical therapists, counselors)7663
Long-term care planning and assistance—understanding, planning, and paying for long-term care8814
Education on alternative, nondrug approaches for caring for individuals with dementia (e.g., music and art therapy, massage, touch)9735
Caregiver Support
Financial assistance or funding for in-home and out-of-home respite6201
Financial assistance or funding for in-home support—case management, medical supplies, home care6762
Counseling and emotional assistance for caregivers of individuals with dementia (e.g., stress management, how to prevent caregiver burnout, consultation)8093
Financial assistance or funding for adult day care8544
Compensation for caregivers of individuals with dementia8655
Long-Term Care
Home and community-based services (e.g., transportation, affordable assisted living, home-delivered meals, care management, resources to support aging in place)5251
Building an experienced workforce skilled in providing in-home and nursing home care7022
Increasing standards for assisted living facilities, skilled nursing facilities, and hospitals (e.g., oversight of care, avoiding the use of antipsychotic medications to deal with difficult behaviors, tracking progress and change)7413
Increasing the number of long-term care facilities skilled in providing care to individuals with dementia8584
Increasing the number of staff within long-term care facilities (i.e., nursing, social work, health care aides)9175
Advocacy and Awareness
Support policies that provide adequate funding to support individuals living with dementia and their care providers5741
Support policies that promote aging in place for individuals living with dementia7122
Public awareness of resources and supportive services to assist individuals living with dementia and their care providers7253
Make dementia the number one priority for public health policy8354
Public education and help to understand dementia (i.e., destigmatize and facilitate understanding of the disease)8655

Research Priorities Identified by Study Participants

PrioritiesBorda CountaRank Order
Overall Priorities
Research about cure and treatment (drug treatment)6891
Research about caregiving—person-centered care, family caregivers, and workforce7372
Research about education and training—for the individual with dementia, families, workforce, and the public8483
Research about quality of life—the impact of dementia on the whole family8664
Research about complementary therapies (i.e., supplements, remedies, alternative treatments)9365
Research about care settings (i.e., home, long-term care, day care, hospital)9636
Caregiving
How to reduce stress, fear, and distress for the individual with dementia, family, and all caregivers7321
Effective approaches to delivering care and providing support7742
Interacting and communicating with the individual with dementia8093
Managing difficult behaviors without drugs8093
Care planning for families, including end-of-life care and financial issues9115
Involving the individual with dementia in decision making1,0466
Care Setting
Providing and supporting care in the home (i.e., day care, respite, home help, nursing and medical care)5441
Creating a helpful environment for the individual with dementia (e.g., routines, space, signage, home-like)7032
Workforce issues in long-term care and hospital7843
Impact of facilities such as Green Housesb, dementia villages, households compared with traditional nursing homes8094
Technology to maintain safety and independence8265
Complementary and Alternative Therapies
Impact of sensory therapies (e.g., music, art, aromatherapy) on the individual with dementia5171
Role of nutrition, supplements in the prevention and treatment of dementia5402
Developing methods to measure the impact of complementary and alternative therapies5583
Impact of touch therapies (e.g., Reiki, massage, acupuncture) on the individual with dementia7984
Education
Best practices for educating/training the workforce (e.g., physicians, nurses, social workers, lawyers, aides, students)4531
Organizational culture change and person-centered approaches to care4862
Best practices for educating the individual with dementia, family, and friends—content, method (e.g., classroom, web-based)5293
Quality of Life
How to help the individual with dementia remain engaged with life5091
How to maintain abilities (e.g., physical, cognitive), personal skills, and strengths (work issues)5512
How to help friends, family, caregivers engage with the individual with dementia7163
How to measure quality of life and the impact of dementia for the individual with dementia and family7534

10.3928/00989134-20150710-02

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