An advance directive is not the end of decision-making in dementia

Design

Retrospective nationally representative study (Health and Retirement Study exit interviews)

Population

5,389 US decedents aged ≥50; 17.7% with dementia

Primary outcome

Advance directive completion and end-of-life decision needs

Effect

Directive 81.3% vs 69.1%, aRR 1.11 (1.07–1.15); unable to participate 78.9% vs 48.0%

This nationally representative US study, published in JAMDA on 21 September, used exit interviews with the families of 5,389 people aged 50 and over who died between 2010 and 2022; 17.7% had dementia.

People with dementia were more likely to have completed an advance directive (81.3% vs 69.1%, aRR 1.11) and to face important medical decisions in their final days (54.3% vs 47.2%). They were much more often unable to take part in those decisions (78.9% vs 48.0%), and children or grandchildren were usually the main decision-makers (63.9% vs 45.6%). Among those with directives, comfort-focused care was preferred and received at similar high rates in both groups.

The written directive was more common in dementia, yet the need for decisions near death was greater. The document needs an ongoing conversation with the family who will make those decisions. Where families usually make these decisions without a written directive, that conversation is the main mechanism anyway.

• Start advance care planning while the person with dementia can still take part.
• Identify who in the family will make decisions, and include them early.
• Revisit the plan as dementia progresses, not only at diagnosis.
• Expect decisions to be needed near the end even when a directive exists.
• Involve palliative care in advanced dementia.

Why it matters

Most people with dementia could not speak for themselves at the end, whatever paperwork existed.

Don't overread it

Data come from family proxy interviews after death, which may be affected by recall.

The statistics, in plain English

An adjusted risk ratio of 1.11 means people with dementia were about 11% more likely to have a directive, after accounting for other factors. The biggest difference was in inability to participate, 79% versus 48%.

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