Article Archive
September/October 2019

Long Term Care: Advance Care Planning for Families of Adults With Dementia
By Debra Hain, PhD, APRN, AGPCNP-BC, FAANP, FNKF; Mary Brown, DNP, MS, MSN, FNP-BC; and Maria Ordóñez, DNP, APRN, GNP-BC, PMHNP-BC, FAANP, FAAN
Today’s Geriatric Medicine
Vol. 12 No. 5 P. 30

Alzheimer’s disease and related dementia (ADRD) affects more than 5 million Americans and is the sixth leading cause of death.1 Alzheimer’s disease, a worldwide problem, involves the loss of intellectual functioning including memory and judgment. Over the next decade, the global population of individuals older than 60 is projected to grow at an unprecedented rate. In 2017, there were about 962 million adults older than 60, a number expected to rise to nearly 2.1 billion by 2050.2 The risk of ADRD increases with age, which will lead to a substantial number of older adults living with dementia. According to Alzheimer’s Disease International’s 2016 report, “Improving Healthcare for People Living With Dementia: Coverage, Quality and Costs Now and in the Future,” the number of persons worldwide with dementia is projected to increase from 47 million in 2015 to 132 million by 2050.3

ADRD progresses slowly over many years from mild, moderate, and severe to the terminal stage of this neurodegenerative disease. As the disease progresses, individuals experience diminishing cognitive function with decreased ability to engage in meaningful communication about their health care, which includes end-of-life (EOL) care decisions.3-7 Therefore, it’s critical that advance care planning (ACP) including EOL choices are started in the early stages of dementia when older adults have the cognitive capacity to make informed decisions.

ACP is a process of engaging in shared decision making and documenting a person’s choices, preferences, and wishes to guide their future health care for when they are no longer capable of making decisions for themselves due to injury or illness, including ADRD.8-12 A recent review of ACP best practices reported that ACP should focus on communication between patients and their families and health care providers about values and preferences for health care at EOL, rather than on merely completing a document.13 In a review about ACP for adults with dementia, researchers concluded that ACP discussions should take place early in the disease trajectory, but EOL discussions frequently were not done before ADRD progressed to a stage at which individuals were unable to disclose their EOL wishes.14,15 In addition, recommendations from a consensus statement related to EOL care in advanced dementia from the Summit on Intellectual Disability and Dementia called for intensive attention and effort to ACP for individuals with ADRD. This statement supports the crucial need to start EOL discussions as early as possible before the onset of disease or before disease progresses to moderate to severe stages.16 Because of the importance of ACP and the awareness that many older adults are not engaging in these discussions with their health care providers, several initiatives such as the Conversation Project from Institute for Healthcare Improvement (IHI) have become available.

The Conversation Project focuses on empowering people to have their wishes for EOL care expressed and respected. A Conversation Starter Kit is an important part of the IHI initiative.17 The Conversation Starter Kit is a tool that was developed to help people have conversations with their loved ones about their wishes regarding EOL care. It’s available in multiple languages and includes free resources, education tools, and training programs that promote ACP conversations between those with cognitive impairment and their loved ones. There’s also information designed for specialized populations and strategies for community outreach.18 Several other kits (eg, choosing a health care proxy, Alzheimer’s dementia starter kit) found at the IHI website can be used to support ACP conversations with community-residing older adults in the early stages of ADRD. Supporting such conversations is extremely important and could be done at established dementia-specific day centers or memory disorder centers. In a memory disorder center in Southeast Florida, health care professionals were inquiring about ACP with older adults who presented to the center for evaluation of their cognitive status. However, postvisit assessment revealed that many older adults were not engaging in ACP conversations. To improve ACP conversations, the health care providers at the center decided to conduct a quality improvement project with family caregivers of older adults with ADRD before designing a research study aimed at enhancing ACP conversations in community-residing older adults with ADRD.

A nurse practitioner seeking her doctor of nursing practice (DNP) degree conducted a quality improvement (QI) project at a Florida State designated Memory Disorder Center. The QI project was developed using the Conversation Project Starter Kit to increase ACP conversations with family caregivers of older adults with ADRD who had undergone an evaluation of their cognitive status at the center. The purpose of this QI project was to evaluate knowledge, completion of the Conversation Project, and attendance of adult family caregivers of older adults with ADRD at the Louis and Anne Green Memory and Wellness Center in Boca Raton, Florida, not to contribute to generalizable knowledge. Therefore, this study does not fall under the purview of the institutional review board, but rather was reviewed by the DNP committee for ethical issues related to human subjects.

After permission to conduct the project was obtained from the director of the center, a discussion about recruitment strategies and development of the educational intervention about ACP helped guide the next steps. Caregivers who utilized the many supportive services at the center were recruited through flyers posted in the center’s lobby. Potential participants were informed they could refuse to be involved in the project at any point and still receive services at the center and that any data collected would be deidentified. Participants agreed to attend DNP student-led, one-hour group educational sessions once weekly for a total of six weeks at the center. The educational sessions provided information and content that fostered group discussion and interaction about ACP. The Conversation Kit guided the discussions, as participants were encouraged to ask questions and provide feedback to the ACP process.

Outcomes Measured
Before and after the six sessions, caregiver knowledge of ADRD was measured by the Alzheimer’s Disease Knowledge Scale, a valid and reliable 30-item, true/false scale that takes about 10 minutes to complete. Items on the scale include assessment, diagnosis, symptoms, trajectory of ADRD, life impact, caregiving, and treatment and management.19 Completion of the Conversation Project and attendance were measured before and after the six-week intervention.

Six female caregivers ranging in age from 39 years to 74 years (mean age 62.4) agreed to participate in the project. All participants attended all the sessions. Fifty percent completed the Conversation Kit and reported plans for future conversations with their health care providers. One participant stated she was not ready to have the conversation, and two reported they were contemplating completion of the Conversation Kit. Before vs after the intervention, knowledge increased for all participants. All participants reported appreciation for having this knowledge to support them in the decision-making process about ACP with their loved ones.

Although the project was limited by small sample size and a narrow demographic profile of participants, the results contributed to the evidence-based knowledge about possible ways to enhance ACP discussions. The caregivers in this QI project were at different stages of caregiving (this was not measured), with some having more experience than others, which is something to consider in future projects. Some participants (n=3) were more willing than others to complete the Conversation Kit; it would be worthwhile to discover whether caregiver experience played a role. There’s evidence that barriers to ACP include lack of knowledge, procrastination, dependence on family, difficulty talking about the subject, and waiting for the health care provider to bring up the topic.20 Participants in this QI project had similar reasons as to why they have not engaged in ACP. The outcomes of this QI project could be useful to support ACP in clinical settings such as primary care practice and dementia-specific centers. The findings from this project provided important information about recruitment of adults for ACP. It’s well established that recruitment for studies is one of the biggest challenges researchers face. Although this was a QI project in a center where these caregivers utilized supportive services, there were still difficulties recruiting. Interestingly, caregivers often were busy with their lives and didn’t feel they had the time to come to all the sessions. This should be considered when designing future QI projects or research.

An important finding that addresses the barrier of lack of knowledge was that the participants appreciated the time taken to help them gain knowledge and insight into the importance of ACP in early ADRD. Having knowledge is a prerequisite to behavior change, and when family caregivers think ACP is of value to honor their loved ones’ wishes and preferences for care, it’s more likely they will promote early ACP in those with ADRD. The education sessions were well attended, and in part this may be due to the interactive aspect of the project. Caregivers were able to share their stories as they discovered possible strategies to support their loved ones. A key facilitator to ACP is the availability of a dedicated professional to educate both patients and families. Best practices recommend that clinicians increase their awareness and ability to utilize evidence-based strategies for ACP interventions.21

The results of this QI project are not generalizable but can be used to support future projects focused on improving outcomes such as hospitalization, increasing appropriate use of hospice and palliative care services, and, most important, the development of programs that increase ACP in this vulnerable population. Trying to understand patients’ stories by involving caregivers may be an essential aspect of ACP completion. The family caregivers in this project had various reasons for not completing ACP. Any future work should include increased understanding of current fears and other barriers to ACP completion.22

— Debra Hain, PhD, APRN, AGPCNP-BC, FAANP, FNKF, is a professor, Blake Distinguished Professor, and MSN coordinator of the AGNP concentration at Florida Atlantic University’s Christine E. Lynn College of Nursing, and is a nurse practitioner at Cleveland Clinic Florida in the department of nephrology.

— Mary Brown, DNP, MS, MSN, FNP-BC, has a passion for aging in place for seniors and is a nurse practitioner for Palm Beach PACE providing clinical care for elder adults.

— Maria Ordóñez, DNP, APRN, GNP-BC, PMHNP-BC, FAANP, FAAN, is an associate professor and the director of the Louis and Anne Green Memory and Wellness Center of the Christine E. Lynne College of Nursing; coordinator of the Florida Atlantic University (FAU) Memory Disorder Clinic, part of the State of Florida’s Alzheimer’s Disease Initiative; and an assistant professor of clinical biomedical science (secondary) at FAU’s Charles E. Schmidt College of Medicine.


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[Update: As of February 7, 2022, this information is available at]

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