Background:  There are approximately 55 million people worldwide affected by dementia, with this number expected to double in the next 20 years (1). To best care for these persons living with dementia (PLWDs) and their care partners, anticipatory guidance (AG) is needed to identify the current stage of dementia, forecast care issues, and prevent/manage complications and symptoms (2). This Fast Fact reviews the trajectory of dementia, the prognosis, and AG needs at each stage.

Terminology:  There are various ways to stage dementia.Stages include early/mild, middle/moderate, or late/severe stage in reference to the progressive worsening of cognition and function over time. The most common clinical scales are the Global Deterioration Scale (GDS) and the Functional Assessment Stage Test (FAST). Higher scores represent worsening function and/or cognition.

• The GDS uses a 7-stage scale of cognitive deterioration for those suffering from a primary degenerative dementia such as Alzheimer’s Disease (Alz) (3). 
• The FAST scale tracks functional status, specifically Instrumental Activities of Daily Living (IADLs) such as societal tasks like managing finances or driving, and Activities of Daily Living (ADLs) such as personal health tasks like hygiene, dressing, and feeding (4).

	Mild/Early-Stage	Moderate/Middle-Stage	Severe/End-Stage
Staging:	GDS 4; FAST 3-4	GDS 5-6; FAST 5-6	GDS 7; FAST 6-7
Defined by:	Mainly independent but begin to make mistakes in IADLs (5,6).  They may withdraw from social situations and deny issues. They often retain decision-making capacity at this stage.	IADL and ADL issues emerge. PLWD may get lost in familiar places, not recognize family members, and experience irritability, agitation, and sundowning (5,6). Surrogate takes on more health-care decision-making.	Requires help for most, if not all, ADLs; communication is severely limited; lacks decision-making capacity. Feeding difficulties like dysphagia and poor oral intake emerge (5,6).
Time per stage:	Approx. 2-4 Years (7)	Approx. 2-5 years (7)	Approx. 1-3 years (8)

Prognosis: See Fast Fact #150. Prognosis varies depending on the type of dementia, the stage, co-morbidities, functional status, nutritional status, gender, and age. The median life expectancy for someone with Alz is around 7-10 years from diagnosis (5). Sentinel events like a fall with fracture or a hospitalization may cause a precipitous decline leading to skipped stages (9).

Hospice criteria: A FAST score of 7(a-e) is the suggested criteria for Medicare hospice eligibility. This entails a PLWD who is unable to communicate more than a few words, confined to a wheelchair or bed, and incontinent of bladder and bowel. This criterion is not the only determination of a prognosis of 6 months or less, as PLWD with lower FAST scores can qualify for hospice with relevant comorbidities, frequent hospitalizations, and dysphagia leading to aspiration or feeding problems (10). Other prognostication tools are available (e.g., Mortality Risk Index, ADEPT) (11).

Communication pearls regardless of dementia stage (6, 12-14):

• Explain that dementia is a terminal illness.
• Provide prognosis, expectations for progression, and where they are in the disease.
• Provide guidance on behavioral issues, safety, and communication strategies before they occur.
• Elicit the PLWD’s values, what activities are important to them, and quality-of-life factors.
• Assess capacity by asking open-ended questions (like disease understanding, understanding of treatment options) or, in some cases, using a more formal assessment, like the ACE tool (15).

AG and advanced care planning (ACP) pearls based on stage (12-14):

Mild/Early-Stage:

• Identify a surrogate decision-maker, review their role, and include in discussions.
• Complete advanced directives and discuss use of an elder care lawyer for legal documents.
• Based on the patient’s goals and values, discuss future care preferences such as hospitalizations or code status, focused on clarification for the surrogate as the disease progresses.
• Review dementia-modifying medication options (see Fast Fact #174).
• Assess access to support groups and resources (16).
• Discuss safety concerns including driving cessation, gun safety, and medication adherence.

Moderate/Middle-Stage:

• Provide caregiver support and educational materials addressing common dementia-related behaviors like apathy, depression, agitation, irritation, paranoia, hallucinations, wandering, sundowning (17).
• Explore options for living arrangements, including transition from home to a facility, in-home care, adult day centers, and respite care.
• Discuss the signs of advanced dementia — infections, hospitalizations, swallowing difficulties.

Severe/End-Stage:

• Address concerns about swallowing, eating, and weight loss (18). Distinguish which causes are reversible versus related to dementia progression. Recommend careful handfeeding over medically administered nutrition and hydration (19-21).Discuss focus of care (comfort vs life-prolongation) and common end-of-life symptoms like dyspnea, pain, and aspiration.  Consider a hospice referral if the primary goal of care is comfort (18).
• Discuss deprescribing opportunities (see Fast Facts #369, Fast Fact #174, Fast Fact #322, and Fast Fact #258)

Summary: Provide anticipatory guidance early and recurrently for PLWD and their caregivers. By doing so, the goal should be to preserve as much autonomy for the PLWD as possible and to help surrogates prepare for illness-related changes and challenges to come (14).

References 

1. Piers R, Albers G, Gilissen J, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17(1):88. Published 2018 Jun 21. doi:10.1186/s12904-018-0332-2.
2. Sparks M. Assessment and management of alzheimer’s disease. Topics in Advanced Practice Nursing eJournal. 2001;1(2). Accessed August 11, 2022. https://www.medscape.com/viewarticle/408411.
3. Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982;139(9):1136-1139. doi:10.1176/ajp.139.9.1136.
4. Arcia A, Suero-Tejeda N, Bakken S. Development of Pictograms for an Interactive Web Application to Help Hispanic Caregivers Learn About the Functional Stages of Dementia. Stud Health Technol Inform. 2019;264:1116-1120. doi:10.3233/SHTI190399.
5. Carlsson CM, Gleason CE, Puglielli L, Asthana S. Dementia Including Alzheimer Disease. In: Halter JB, Ouslander JG, Studenski S, et al., eds. Hazzard’s Geriatric Medicine and Gerontology. 7th ed. McGraw-Hill Education; 2017. Accessed August 5, 2022.
6. Meier DE, Widera E. Communicating About What to Expect as Dementia Progresses. Accessed August 4, 2022. https://www.capc.org/training/best-practices-in-dementia-care-and-caregiver-support/communicating-about-what-to-expect-as-dementia-progresses/.
7. Seven Stages of Dementia: Symptoms, Progression & Durations. Accessed August 4, 2022. https://www.dementiacarecentral.com/aboutdementia/facts/stages/.
8. Harrison KL, Ritchie CS, Hunt LJ, et al. Life expectancy for community-dwelling persons with dementia and severe disability. J Am Geriatr Soc. 2022;70(6):1807-1815. doi:10.1111/jgs.17767.
9. Fong TG, Davis D, Growdon ME, Albuquerque A, Inouye SK. The interface between delirium and dementia in elderly adults [published correction appears in Lancet Neurol. 2015 Aug;14(8):788]. Lancet Neurol. 2015;14(8):823-832. doi:10.1016/S1474-4422(15)00101-5.
10. LCD – Hospice Alzheimer’s Disease & Related Disorders (L34567). Accessed August 11, 2022. https://www.cms.gov/medicare-coverage-database/view/lcd.aspx?LCDId=34567.
11. Brown MA, Sampson EL, Jones L, Barron AM. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: A systematic review. Palliat Med. 2013;27(5):389-400. doi:10.1177/0269216312465649.
12. Slyer JT, Archibald E, Moyo F, Truglio-Londrigan M. Advance care planning and anticipatory decision making in patients with Alzheimer disease. The Nurse Practitioner. 2018;43(6):23-31. doi:10.1097/01.NPR.0000532763.68509.e4.
13. Kim H, Cho J, Park WS, Kim SS. Characteristics of Advance Care Planning Interventions Across Dementia Stages: A Systematic Review. J Nurs Scholarsh. 2021;53(2):180-188. doi:10.1111/jnu.12624.
14. Shafir A, Ritchie CS, Garrett SB, et al. “Captive by the Uncertainty”-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic. J Alzheimers Dis. 2022;86(2):787-800. doi:10.3233/JAD-215203.
15. Etchells E. Aid to capacity evaluation (ACE). Joint Centre for Bioethics. Accessed August 29, 2022.
     Aid To Capacity Evaluation (ACE)
16. NIA. Now What? Next Steps After an Alzheimer’s Diagnosis. Alzheimer’s and related dementias education and referral center. June 2020. Accessed August 11, 2022. https://order.nia.nih.gov/sites/default/files/2020-09/next-steps-after-alzheimers-diagnosis.pdf.
17. Caregiver Education – Dementia Care. UCLA Health. Accessed August 5, 2022. https://www.uclahealth.org/medical-services/geriatrics/dementia/caregiver-education.
18. Meier DE, Widera E. Critical Decisions in Advanced Dementia. Accessed August 4, 2022. https://www.capc.org/training/best-practices-in-dementia-care-and-caregiver-support/critical-decisions-in-advanced-dementia/.
19. AAHPM – Feeding patients with advanced dementia. Choosing Wisely. Published February 22, 2013. Accessed August 5, 2022. https://www.choosingwisely.org/clinician-lists/american-academy-hospice-palliative-care-percutaneous-feeding-tubes-in-patients-with-dementia/.
20. AMDA Suggests Oral Feedings Rather Than Feeding Tubes. Choosing Wisely. Published September 4, 2013. Accessed August 5, 2022. https://www.choosingwisely.org/clinician-lists/amda-percutaneous-feeding-tubes-for-patients-with-dementia/.
21. Geriatrics – Feed patients with dementia by hand. Choosing Wisely. Published February 21, 2013. Accessed August 5, 2022. https://www.choosingwisely.org/clinician-lists/american-geriatrics-society-percutaneous-feeding-tubes-in-patients-with-dementia/.

Authors’ Affiliations: (1) Wake Forest University School of Medicine, Winston-Salem, NC and (2) Atrium Health, Charlotte, NC.
Conflicts of Interest:  Dr. Gabbard is supported by the National Institute on Aging of the National Institutes of Health under Award Number K23AG070234. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Version History:  first electronically published in December 2022; originally edited by Sean Marks MD.