advance care planning, Alzheimer disease, anticipatory decision making, cognitive impairment, dementia, disease trajectory



  1. Slyer, Jason T. DNP, RN, FNP-BC, FNAP, FNYAM
  2. Archibald, Ella MS, RN, FNP-BC
  3. Moyo, Fernea MS, RN, FNP-BC
  4. Truglio-Londrigan, Marie PhD, RN, GNP, FNYAM


Abstract: Early advance care planning and anticipatory decision making in the Alzheimer disease (AD) trajectory is a strategy NPs can incorporate to improve managing uncertainty around common decisions. This article explores decisions patients and caregivers face along the AD trajectory and provides resources for patients, caregivers, and NPs.


Article Content

Alzheimer disease (AD) is a complex and progressive disease. Currently, 1 in 10 individuals in the United States over age 65 have some degree of Alzheimer dementia, and there are approximately 200,000 individuals younger than age 65 with early-onset AD.1 AD is individualized and variable in its presentation from the initial appearance of symptoms and throughout its progression. After diagnosis, the average survival is 4 to 8 years, although some patients may live up to 20 years.1

Figure. No caption a... - Click to enlarge in new windowFigure. No caption available.

Patients and caregivers are challenged to make decisions about care management from the time of the initial diagnosis throughout the disease's trajectory.2 Decision making is challenging and often ambiguous, causing uncertainty for both patients and caregivers. NPs continue to fill the primary care needs of a growing U.S. population. However, it has been reported that 30% of NPs do not assess for brain health in their patients, often due to a lack of standardized protocols and assessment tools.3


Awareness and knowledge of brain health and the trajectory of AD are important for NPs to assist patients in decision making. The purpose of this article is to identify common decisions patients and caregivers experience along the AD trajectory and to explore how NPs can help patients and caregivers prepare for decisions through advance care planning (ACP) and anticipatory decision making.


AD Trajectory

The main changes in AD are observed in the presence of neurofibrillary tangles, amyloid plaques, and cerebrocortical atrophy.4 Delving into the pathophysiology of AD and the complex array of brain changes is beyond the scope of this article. The National Institute on Aging and the Alzheimer's Association published updated guidelines for the diagnostic criteria of AD in 2011.5,6 The diagnostic criteria were revised to incorporate scientific knowledge (including biomarkers of the underlying disease) and to address the needs of researchers and clinicians. The diagnostic criteria include three phases of AD: the preclinical phase, mild cognitive impairment, and AD dementia.5,6


For patients older than age 65, it is recommended that NPs assess and document cognitive status at the annual wellness visit so that cognitive decline can be recognized over time.7 This assessment should begin with a conversation with the patient and/or caregivers related to any concerns with confusion, memory loss, or any difficulty in performing activities of daily living or instrumental activities of daily living. Any concerns should prompt a structured cognitive assessment, such as the Mini-Cog, the General Practitioner Assessment of Cognition, or Memory Impairment Screen.7


A positive screen should prompt a referral for a full dementia evaluation. There is currently insufficient evidence to recommend formal screening for early-onset AD in patients younger than age 65 or in asymptomatic patients over age 65.8 However, any cognitive concerns from the patient, family, or provider should prompt further evaluation, as early diagnosis of AD is important to allow time for decision making early in AD's trajectory.


The AD trajectory is described as a transition process that progresses over three stages: early stage (mild AD), middle stage (moderate AD), and late stage (severe AD).9-11 Cognitive decline is the primary clinical manifestation of AD, initiating its progression years before the first observations of dementia.12


Cognitive decline manifests at varying rates among individuals and is characterized by impairment with "memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgment."11,13 Signs frequently begin with forgetfulness and difficulty learning new information and progress to confusion, difficulty with organization and planning, and lack of judgment. These cognitive impairments affect the individual's ability to function independently and carry out activities of daily living.14


Patients with AD may exhibit difficulties with activities such as self-management of medications, dressing, shopping, preparing food, telephone use, navigating transportation, and financial management. Behavioral symptoms manifest with the progression of AD and exhibit as agitation, aggression, delusions, hallucinations, and wandering.15-17 These changes affect the quality of life of the individual with AD and also result in caregiver stress, role strain, and caregiver burden.10,11


The AD trajectory is medically complex, unpredictable, and ambiguous, ultimately creating a future of decisions that involve uncertainties. Uncertainty occurs when an individual is unable to derive meaning from AD-related events because of unfamiliarity with the circumstances and a lack of reference from which to adequately categorize the details related to new situations and experiences.18 Patients and caregivers who are aware of the potential decisions they may encounter can prepare for challenges through anticipatory decision making, thereby managing the uncertainties of AD.


Anticipatory decision making in AD

Decisions vary across the AD trajectory according to patients' and caregivers' physical, mental, emotional, and financial needs, values, and preferences. Much of the scientific literature focuses on the patient's, caregiver's, or healthcare provider's involvement in decision making with limited information describing the types of decisions faced along the trajectory. Many decisions concern the nuances of daily activities, whereas others are major and correspond to a patient's progression from one stage of AD to another.


Specifically, decisions are made related to: functional, cognitive, and behavioral decline; driving performance and driving safety; ACP, advance directives, end-of-life (EOL) care, palliative care, and informed consent; preparing for emergencies such as natural disasters or the death of a caregiver; medical treatments and participation in clinical trials; financial management; cost consideration; living arrangements, such as assistive living and long-term care placement, including hospice; and self-help programs for caregivers.19-41


Patients with early-onset AD may have additional decisions to make related to family, work, finances, and long-term care. Again, the literature is sparse and mainly anecdotal regarding decisions specific to the patient with early-onset AD. The Alzheimer's Association provides a list of topics and resources to consider when making decisions related to parenting, financial planning (such as saving for a child's college education), retirement planning, loss of income, and genetic testing.42,43


Being aware of the potential decisions the patient and caregiver may face provides NPs with the ability to facilitate discussions and anticipatory decision making early in the disease trajectory. Anticipatory decision making, therefore, is preparatory work that informs, supports, and guides patients with AD and their caregivers to manage uncertainties.44,45 The goal of anticipatory decision making is to make decisions that are well thought out at a time when the patient is able to participate in decision making and make personal preferences known. Too often this does not occur, resulting in hasty decisions that may cause patient distress and caregiver guilt.


An early and timely diagnosis prior to significant cognitive decline presents the NP with both challenges and opportunities. Early awareness and readiness to accept the diagnosis facilitates the patient's ability to participate in anticipatory decision making and express preferences regarding current and future decisions. Early diagnosis also offers patients and their caregivers the opportunity to express fears and concerns while providing the opportunity to seek out support and develop coping strategies.46


Hamann and colleagues identified that patients with early-stage AD preferred to remain autonomous when making decisions, with their caregivers maintaining a minimal role.47 Hamann and colleagues also found that both providers and caregivers had a poor degree of understanding of the patient's desire to participate in decision making.47 Therefore, it is important to elucidate patients' preferences for participation in decision making and not dismiss their choices. Engaging patients earlier in the AD trajectory is vital to maintaining autonomy as cognitive decline progresses.


The patient-provider relationship is the context within which anticipatory decision making takes place. NPs begin their work during the assessment, which provides the opportunity to identify the individual's ideas, values, and preference regarding participation in decision making. The assessment also provides the NP with the time to uncover what the patient and caregiver understand about the diagnosis.


The NP may find that the patient and caregiver do not fully comprehend what AD is or the trajectory of the disease. The NP takes the assessment information and provides education, considering the patient and caregiver's readiness, which will expand the patient's and caregiver's knowledge. In the event that the patient and caregiver are not ready, comfort, support, guidance, and counseling strategies may be initiated, leading the patient and caregiver to acceptance of the AD diagnosis.29


ACP: A strategy for anticipatory decision making

ACP is the process of understanding a patient's preferences, values, and goals of care and entrusting the decisions to uphold these goals to a trusted caregiver in the event the patient is unable to independently make decisions.48 NPs use ACP as they work with patients and caregivers to contemplate, communicate, and develop a flexible plan of action for anticipatory decision making. Using ACP to anticipate potential decisions prepares the patient and caregiver, thereby managing or preventing uncertainty.49


ACP has been shown to have a positive impact on a patient's quality of life while maintaining autonomy and a sense of independence.29 The importance of sharing in decisions is challenging from the perspective of the decisional capacity of the patient with AD.47,50-52 Participation of patients with AD in decision making has been described to progress on a continuum. Early in the disease trajectory there is "collaborative support" in decision making between patients and caregivers.19


During early-stage AD, patients are aware of their cognitive decline but remain able to specify long-held preferences and engage in decision making while collaborating with caregivers. In mid-stage AD (where cognitive decline progresses), the caregiver's awareness of the patient's deficits supersedes that of the patient's. During this "transition period," the caregivers become more involved in the patient's choices due to a decline in the patient's perception of his or her own abilities.19 Finally, in late-stage AD, the caregiver enters a period of "unilateral support" by becoming a surrogate decision maker by engaging in roles that are more "assistive" in nature (through active engagement and guidance of the patient) or "restrictive" (by prohibiting certain activities) in order to reduce harm.19


ACP is frequently addressed later in the disease trajectory with a focus on topics such as advance directives, EOL decisions, initiation of treatments, decisions about patient participation in clinical trials, and driving.33,53,54 A systematic review by Robinson and colleagues suggested limited effectiveness of ACP as an intervention strategy in later stages of a disease.55 Dening and colleagues stressed the importance of ACP prior to the point when cognitive decline interferes with decisional capacity; however, the exact point in time is specific to the patient's individual circumstances.50


Despite the documented evidence that ACP is best initiated early in the AD trajectory, there is often reluctance from the patient, caregiver, and/or provider to do so, which frequently leads to the patient being excluded, uninformed, or if the patient is informed, having a decision acted upon regardless of personal preferences.56 The latter may occur when the patient did not make his or her wishes known to the caregiver or the caregiver enacted an alternative decision based on current circumstances. NPs assess the patient and caregiver's readiness to participate in ACP. ACP discussions are challenging at best, and emotions that the patient and caregivers experience include guilt, loss, and fear, which can be overwhelming.33,39


Tension and conflicts may also arise as the future trajectory is visualized.57 A lack of knowledge and misperceptions are barriers to implementing ACP as a strategy for anticipatory decision making.29 Education involves a discussion on what ACP encompasses and how the strategy of ACP is an opportunity for conversations involving anticipatory decision making to maintain respect for the patient's wishes and autonomy. This time also offers an opportunity for the patient and caregiver to express fears and concerns, giving them a chance to seek out support and develop coping strategies.46 Goals of care and decisions may change over time, necessitating the need for ongoing conversations and updated documentation.


ACP provides the opportunity for the NP, patient, and caregiver to discuss and anticipate decisions. Anticipatory decision making provides a potential structure that assists the patient and caregiver in managing potential uncertainty. A multiplicity of resources will be necessary to assist patients in their anticipatory decision making (see Anticipatory decisions in AD and associated resources).


Relationship building, assessment, education, support, guidance, and counseling take time, consistency, and continuity. NPs must advocate for organizational policies and practice models that facilitate this continuity and consistency to reduce patient uncertainty.33 Since January 2016, the Centers for Medicare and Medicaid Services (CMS) reimburses for ACP.58 In addition to discussions about advance directives, discussions about patient preferences and treatments that may occur after the decline of independent decision-making abilities are also eligible for reimbursement.

Table Anticipatory d... - Click to enlarge in new windowTable Anticipatory decisions in AD and associated resources
Table Anticipatory d... - Click to enlarge in new windowTable Anticipatory decisions in AD and associated resources (Continued)
Table Anticipatory d... - Click to enlarge in new windowTable Anticipatory decisions in AD and associated resources (Continued)

The Current Procedural Terminology (CPT) code 99497 is used for the first 30 minutes of face-to-face discussion with the patient and/or caregiver, and CPT 99498 is used for each additional 30 minutes. In January 2017, CMS approved CPT code G0505 for the creation of a comprehensive care plan, including cognitive, functional, and safety assessments; an assessment of caregiver needs; and ACP discussions.59



AD is a global public health issue that requires heightened awareness, advocacy, accurate and timely diagnosis, quality ongoing care, accessible and acceptable services and networks, caregiver support, ongoing research, and a workforce with essential knowledge and skill sets.11 Today, AD is diagnosed earlier than previous decades, offering opportunities for patients and caregivers to visualize their potential disease trajectory and offering a time for contemplation, discussion, and anticipatory decision making that is mindful of individual preferences and choices.


The initiation of ACP that includes anticipatory decision making for common decisions patients and caregivers face along the AD trajectory is an opportunity for the NP to advocate for this population by raising their awareness about ACP, providing education, counseling, support, and guidance during the ACP process, thereby addressing AD as the public health issue expressed by the World Health Organization.11




1. Alzheimer's Association. 2017 Alzheimer's disease facts and figures. Alzheimers Dement. 2017;13:325-373. [Context Link]


2. Alzheimer's Foundation of America. About Alzheimer's diseases. 2016. [Context Link]


3. Women against Alzheimer's & The National Association of Nurse Practitioners in Women's Health. Brain health is women's health. 2017. [Context Link]


4. Vinters HV. Emerging concepts in Alzheimer's disease. Annu Rev Pathol. 2015;10(1):291-319. [Context Link]


5. Albert MS, DeKosky ST, Dickson D, et al The diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7(3):270-279. [Context Link]


6. McKhann GM, Knopman DS, Chertkow H, et al The diagnosis of dementia due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7(3):263-269. [Context Link]


7. Cordell CB, Borson S, Boustani M, et al Alzheimer's Association recommendations for operationalizing the detection of cognitive impairment during the Medicare Annual Wellness visit in a primary care setting. Alzheimers Dement. 2013;9(2):141-150. [Context Link]


8. National Guideline Clearinghouse. Recommendations on screening for cognitive impairment in older adults. 2016 [Context Link]


9. Alzheimer's Association. Stages of Alzheimer's. 2017. [Context Link]


10. Koca E, Ta_kapilio_lu O, Bakar M. Caregiver burden in different stages of Alzheimer's disease. Arch Neuropsychiatry. 2017;54(1):82-86. [Context Link]


11. World Health Organization. Dementia: A Public Health Priority. Geneva, Switzerland: WHO Press; 2012. [Context Link]


12. Rajan KB, Wilson RS, Weuve J, Barnes LL, Evans DA. Cognitive impairment 18 years before clinical diagnosis of Alzheimer disease dementia. Neurology. 2015;85(10):898-904. [Context Link]


13. Sona A, Ellis KA, Ames D. Rapid cognitive decline in Alzheimer's disease: a literature review. Int Rev Psychiatry. 2013;25(6):650-658. [Context Link]


14. Aisen PS, Cummings J, Jack CR Jr, et al On the path to 2025: understanding the Alzheimer's disease continuum. Alzheimers Res Ther. 2017;9(1):60. [Context Link]


15. Van der Mussele S, Le Bastard N, Saerens J, et al Agitation-associated behavioral symptoms in mild cognitive impairment and Alzheimer's dementia. Aging Ment Health. 2015;19(3):247-257. [Context Link]


16. Li XL, Hu N, Tan MS, Yu JT, Tan L. Behavioral and psychological symptoms in Alzheimer's disease. Biomed Res Int. 2014;2014:927804.


17. Holtzer R, Tang MX, Devanand DP, et al Psychopathological features in Alzheimer's disease: course and relationship with cognitive status. J Am Geriatr Soc. 2003;51(7):953-960. [Context Link]


18. Mishel MH. Uncertainty in illness. Image J Nurs Sch. 1998;20(4):225-232. [Context Link]


19. Berry B. Minimizing confusion and disorientation: cognitive support work in informal dementia caregiving. J Aging Stud. 2014;30:121-130. [Context Link]


20. Centers for Disease Control and Prevention. Self-reported increased confusion or memory loss and associated functional difficulties among adults aged >= 60 years-21 states, 2011. MMWR Morb Mortal Wkly Rep. 2013;62(18):347-350.


21. Alvaro LC. Competency: general principles and applicability in dementia. Neurologia. 2012;27(5):290-300.


22. Bayard S, Jacus JP, Raffard S, Gely-Nargeot MC. Conscious knowledge and decision making under ambiguity in mild cognitive impairment and Alzheimer disease. Alzheimer Dis Assoc Disord. 2015;29(4):357-359.


23. Dommes A, Wu YH, Aquino JP, et al Is mild dementia related to unsafe street-crossing decisions. Alzheimer Dis Assoc Disord. 2015;29(4):294-300.


24. Widera E, Steenpass V, Marson D, Sudore R. Finances in the older patient with cognitive impairment: "he didn't want me to take over". JAMA. 2011;305(7):698-706.


25. Boyle PA, Yu L, Wilson RS, Gamble K, Buchman AS, Bennett DA. Poor decision making is a consequence of cognitive decline among older persons without Alzheimer's disease or mild cognitive impairment. PLoS One. 2012;7(8):e43647.


26. Jimenez MAV, Jaen MC, Garcia MV, Barahona-Alvarez H. Decision-making in older people with dementia. Rev Clin Gerontol. 2013;23:307-316.


27. Tew CW, Tan LF, Luo N, Ng WY, Yap P. Why family caregivers choose to institutionalize a loved one with dementia: a singapore perspective. Dement Geriatr Cogn Disord. 2010;30(6):509-516.


28. Davis RL, Ohman JM. Driving in early-stage Alzheimer's disease: an integrative review of the literature. Res Gerontol Nurs. 2017;10(2):86-100.


29. Cheong K, Fisher P, Goh J, Ng L, Koh HM, Yap P. Advance care planning in people with early cognitive impairment. BMJ Support Palliat Care. 2015;5(1):63-69. [Context Link]


30. Coleman AM. End-of-life issues in caring for patients with dementia: the case for palliative care in management of terminal dementia. Am J Hosp Palliat Care. 2012;29(1):9-12.


31. Gusmano M. End-of-life care for patients with dementia in the United States: institutional realities. Health Econ Policy Law. 2012;7(4):485-498.


32. Kwak J, De Larwelle JA, Valuch KO, Kesler T. Role of Advance care planning in proxy decision making among individuals with dementia and their family caregivers. Res Gerontol Nurs. 2016;9(2):72-80.


33. van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, et al Factors associated with initiation of advance care planning in dementia: a systematic review. J Alzheimers Dis. 2014;40(3):743-757. [Context Link]


34. Christensen JJ, Castaneda H. Danger and dementia: caregiver experiences and shifting social roles during a highly active hurricane season. J Gerontol Soc Work. 2014;57(8):825-844.


35. Pompilio N. Backup plans: sometimes family caregivers die before their patients. Here's how to prepare for the worst-case scenario. Neurol Now. 2017;13(5):20-23.


36. Lichtenberg PA. Financial exploitation, financial capacity, and Alzheimer's disease. Am Psychol. 2016;71(4):312-320.


37. Peres K, Helmer C, Amieva H, et al Natural history of decline in instrumental activities of daily living performance over the 10 years preceding the clinical diagnosis of dementia: a prospective population-based study. J Am Geriatr Soc. 2008;56(1):37-44.


38. Handels RL, Wolfs CA, Aalten P, Verhey FR, Severens JL. Determinants of care costs of patients with dementia or cognitive impairment. Alzheimer Dis Assoc Disord. 2013;27(1):30-36.


39. Mamier I, Winslow BW. Divergent views of placement decision-making: a qualitative case study. Issues Ment Health Nurs. 2014;35(1):13-20. [Context Link]


40. Irwin SA, Mausbach BT, Koo D, et al Association between hospice care and psychological outcomes in Alzheimer's spousal caregivers. J Palliat Med. 2013;16(11):1450-1454.


41. Siskowski C, Gwyther L. Education, training, and support programs for caregivers of individuals with Alzheimer's disease. In: SH Zarit, RC Talley, eds. Caregiving for Alzheimer's Disease and Related Disorders: Research, Practice, Policy. New York, NY: Springer; 2013. [Context Link]


42. Alzheimer's Association. If you have younger-onset Alzheimer's disease. 2018. [Context Link]


43. Alzheimer's Association. Risk factors. 2018. [Context Link]


44. Diamond-Brown L. The doctor-patient relationship as a toolkit for uncertain clinical decisions. Soc Sci Med. 2016;159:108-115. [Context Link]


45. Slyer J, Truglio-Londrigan M. Shared decision-making for research, practice, & education: an integrative review. In: Eastern Nursing Research Society 28th Annual Scientific Sessions Abstracts. Vol 62. Pittsburg, PA: Nursing Research; 2016. [Context Link]


46. Alzheimer's Association. Alzheimer's disease facts and figures. Alzheimer's & Dementia. 2015. [Context Link]


47. Hamann J, Bronner K, Margull J, et al Patient participation in medical and social decisions in Alzheimer's disease. J Am Geriatr Soc. 2011;59(11):2045-2052. [Context Link]


48. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53(5):821-832.e1. [Context Link]


49. Centers for Diseases Control and Prevention. Give peace of mind: advance care planning. 2017. [Context Link]


50. Dening KH, Jones L, Sampson EL. Advance care planning for people with dementia: a review. Int Psychogeriatr. 2011;23(10):1535-1551. [Context Link]


51. Hegde S, Ellajosyula R. Capacity issues and decision-making in dementia. Ann Indian Acad Neurol. 2016;19(suppl 1):S34-S39.


52. Trachsel M, Hermann H, Biller-Andorno N. Cognitive fluctuations as a challenge for the assessment of decision-making capacity in patients with dementia. Am J Alzheimers Dis Other Demen. 2015;30(4):360-363. [Context Link]


53. Poppe M, Burleigh S, Banerjee S. Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PLoS ONE. 2013;8(4):e60412. [Context Link]


54. Pollock K, Wilson E. Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life. Southampton, UK: NIHR Journals Library; 2015. [Context Link]


55. Robinson L, Dickinson C, Rousseau N, et al A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing. 2012;41(2):263-269. [Context Link]


56. Taghizadeh Larsson A, Osterholm JH. How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings. Int Psychogeriatr. 2014;26(11):1849-1862. [Context Link]


57. Davis LL, Gilliss CL, Deshefy-Longhi T, Chestnutt DH, Molloy M. The nature and scope of stressful spousal caregiving relationships. J Fam Nurs. 2011;17(2):224-240. [Context Link]


58. Centers for Medicare & Medicaid Services. Advance care planning. 2016. [Context Link]


59. Alzheimer's Associations. Cognitive impairment care planning toolkit. 2017. [Context Link]