Anticipatory Guidance in Dementia Across the Stages #455

Background

There are ∼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 Table 1

Table 1.

Staging Scores, Clinical Presentations, and Prognosis for Alzheimer's Disease by Severity

	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.	IADLs and ADLs issues emerge. PLWDs 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 such as dysphagia and poor oral intake emerge. 5,6
Time per stage	Approximately 2–4 years 7	Approximately 2–5 years 7	Approximately 1–3 years 8

ADLs, activities of daily living; FAST, Functional Assessment Stage Test; GDS, Global Deterioration Scale; IADL, Instrumental Activities of Daily Living; PLWDs, persons living with dementia.

Prognosis

See Fast Fact #150. Prognosis varies depending on the type of dementia, the stage, comorbidities, functional status, nutritional status, gender, and age. The median life expectancy for someone with Alz is ∼7–10 years from diagnosis.⁵ Sentinel events such as 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 a 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 (such as disease understanding and understanding of treatment options) or, in some cases, using a more formal assessment, such as the ACE tool.¹⁵

AG and Advanced Care Planning Pearls Based on Stage^12–14

Mild/early stage

• Identify surrogate decision makers, 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 such as apathy, depression, agitation, irritation, paranoia, hallucinations, wandering, and 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, and 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 such as dyspnea, pain, and aspiration. Consider a hospice referral if the primary goal of care is comfort.¹⁸

• Discuss deprescribing opportunities (see Fast Facts #369, 174, 322, 258)

Summary

Provide AG early and recurrently for PLWDs and their caregivers. By doing so, the goal should be to preserve as much autonomy for the PLWDs as possible and to help surrogates prepare for illness-related changes and challenges to come.¹⁴

Author Disclosure Statement

Dr. J.G. 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.