SLPSystematic ReviewInternational journal of language & communication disorders2022

A qualitative systematic review of the role of families in supporting communication in people with dementia.

Laura Braithwaite Stuart, Catrin Hedd Jones, Gill Windle

PMID 35714124

WHAT IT FOUND

Families with dementia shift roles to protect the person's identity, often becoming gatekeepers or interaction buffers.

Helpful strategies include scaffolding comprehension and using non-verbal cues. Unhelpful habits like asking test questions or overcompensating cause breakdowns. These patterns inform family-centred speech therapy.

Key findings

01Family members adopt new roles such as gatekeepers or interaction buffers to preserve the person with dementia's identity and manage communication with outsiders.

02Helpful strategies identified include scaffolding comprehension, initiating conversation on behalf of the person, and accepting non-verbal communication as intentional.

03Unhelpful strategies include asking 'test questions', overcompensating by talking for the person, and correcting language reversion, which often lead to frustration and withdrawal.

STILL TO COME

How it was doneWhat they foundWhat it means for SLPs

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What it does not show

Only nine studies were included, limiting the breadth of evidence. Most studies focused on late-onset Alzheimer's disease, so findings may not apply to younger-onset or frontotemporal dementias. People with dementia were rarely included as active participants; most data came from family members' perspectives. No studies included families from the LGBTQ+ community, limiting applicability to non-traditional family structures. The review excluded intervention studies, so it describes strategies used but does not test their efficacy.

The easy way to misread this

Do not treat these strategies as proven interventions. This is a qualitative synthesis of how families describe their experiences. The review identifies patterns in communication but does not provide evidence that these strategies improve clinical outcomes or reduce caregiver burden.

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