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End of Life Planning When Dementia Is a Real Risk 

This session focused on how financial professionals can help clients and families plan early for the possibility of dementia—because once cognitive capacity is impaired, many legal and medical choices become difficult or impossible to make or change.

1) Why dementia planning is urgent (and often delayed)

• Advance directives are still not the norm. The webinar stated “about 1 in 3 adults” have an advance directive. That’s directionally consistent with a widely cited meta-analysis finding ~36.7% of U.S. adults have completed an advance directive (varies by study and population).
• The webinar also stated only ~30% of people in skilled nursing facilities have an advance directive. National data often show higher rates in nursing home settings (depending on definition and year), so this “30%” figure may reflect a narrower measure (e.g., a specific document type, a particular care setting, or a local/organizational sample) rather than broad national nursing-home prevalence.

What matters operationally: even when documents exist, they may be unshared, inaccessible, outdated, or not in the medical chart, which can lead to crisis decision-making, family conflict, and court involvement.

2) Dementia basics and trajectories 

• “Dementia” is a symptom umbrella, not a single disease—planning improves when the underlying cause is clearer.
• Alzheimer’s disease is the most common cause of dementia, but a best-supported estimate is about 60%–80% of dementia cases, not “70%–80%” as stated in the Otter summary.
• Vascular dementia was discussed as commonly related to strokes and cardiovascular disease and can appear more “stepwise” or abrupt compared with Alzheimer’s.
• The presenters emphasized that dementia often looks like a long, uneven decline, with fluctuations, rather than a straight line. Practical implication: capacity can vary day-to-day, and families should plan for that variability.

Stage timing: The webinar used approximate stage lengths (early 1–3 years; moderate 5–10+ years; late stage often 24/7 care). External clinical references describe wide variation by person and diagnosis; the key planning takeaway is that dementia can require years of increasing support and that late-stage care commonly involves infections, swallowing issues, falls, and high caregiving intensity.

3) The “must-do” documents (and what the transcript stressed)

The panel repeatedly came back to two essentials to complete early (while capacity is clear):

1. Advance healthcare directive (healthcare proxy + treatment preferences)
2. Financial power of attorney (so someone can act on financial/legal matters without conservatorship)

Add-ins that were especially practical:

• Do not lock documents away. Make sure they’re in the medical record, shared with the proxy/agent, and easy to retrieve in emergencies.
• Update cadence: the webinar suggested revisiting about every 5 years (and sooner if health, family, or location changes).
• Choose one primary surrogate/agent (co-agents can stall decisions). Use backup surrogates and consider logistics like time zones and ability to show up in person.
• The speakers highlighted the real-world risk of conservatorship when no POA exists, using a case example to show how joint ownership/joint accounts can still create legal barriers when one spouse declines.

4) Limits of directives and “capacity-gated” decisions

A key point in the session: some end-of-life options require present-time decision-making capacity and can’t simply be “pre-authorized” by a directive. The speakers stressed planning early helps align care with values, but there are legal/clinical boundaries depending on the specific intervention and jurisdiction.

5) Communication: the “how” matters as much as the forms

The transcript emphasized skills and workflows that advisors can adopt:

• Treat planning as an ongoing conversation, not a one-and-done form fill.
• Start with values and priorities, then translate into choices.
• Use plain language, open-ended questions, and allow pauses (especially when families are emotionally overloaded).
• Use person-first language (“living with dementia”) and normalize the emotional load.
• A practical tip was to use the annual wellness visit as a natural time to review directives with a physician—by explicitly setting the appointment purpose in advance.

6) Tools and resources highlighted in the webinar

The presenters recommended values-based tools intended to help families articulate preferences before crisis:

• Dementia Values and Priorities Tool (creates a document you can add to an existing directive)
• My End-of-Life Decisions / guided planning toolkit (values + planning prompts)

They also noted the availability of end-of-life and legal consultations through the presenting organization (the webinar described these as free and accessible).

Sources 

Advance directives prevalence (general population)

• https://www.healthaffairs.org/doi/10.1377/hlthaff.2016.0897 (meta-analysis reporting ~36.7% completion; commonly cited baseline)

Advance directives prevalence (nursing home / facility settings — varies by definition and year)

• https://www.cdc.gov/nchs/data/databriefs/db54.pdf (NCHS Data Brief on advance directives and related planning documents in care settings)

Alzheimer’s as the most common cause of dementia (60–80% of cases)

• https://www.nia.nih.gov/health/alzheimers-and-dementia/alzheimers-disease-fact-sheet

Stages and progression framing (broad clinical overview)

• https://www.alz.org/alzheimers-dementia/stages
• https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448

Parkinson’s disease and dementia risk 

• https://www.parkinson.org/understanding-parkinsons/non-movement-symptoms/dementia(Parkinson’s Foundation overview and ranges)
• https://www.medlink.com/news/in-parkinson-disease-dementia-may-occur-less-often-or-later-than-thought(large-study summary showing ~50% at 15 years, ~74% at 20 years in one cohort)

Values-based dementia planning tool 

• https://compassionandchoices.org/dementia-values-tool/

Medical aid in dying: capacity is generally required in authorizing jurisdictions (relevant to the webinar’s “capacity-gated” point)

• https://compassionandchoices.org/our-issues/medical-aid-in-dying/