When it comes to lived experience, people living with dementia are the experts. But often they're not included in policy discussions or community consultations, even when the issue directly relates to their lives.

Seeking input from people living with dementia is vitally important. However, it can involve some extra considerations.

The Irish Dementia Working Group (IDWG), an advocacy organization composed of people living with dementia, developed a user-friendly guide for individuals and organizations who wish to involve people living with dementia in their work or gain their views in a formal way.

                                 Kevin Quaid

The guide, which was published in April 2020, was created with the support of the Alzheimer Society of Ireland and the Centre for Economic and Social Research on Dementia (CESRD) at the National University of Ireland, Galway.

Kevin Quaid is the vice-chair of the European Working Group of People with Dementia and a member of the IDWG. Quaid is also living with Lewy body dementia.

He worked alongside dementia researchers, caregivers and other people living with dementia to develop the guide, and he says that bringing people living with dementia into big-picture decision-making processes, research, advisory and policy creation around the disease is crucial.

“There was a light-bulb moment,” says Quaid. “If we’re talking about dementia here, there are so many types of it, who better to ask than the experts? And the experts are the people that have dementia.”

The 23-page guide, called Hear Our Voice!, identifies best practices when formally involving people with dementia in policy, advisory, consultation and conference activities.

Since its release, the guide has been adopted by the National Dementia Office of the Health Service in Ireland and accessed nearly 150 times online.

General principles

Hear Our Voice! outlines a set of eight general principles that organizers and facilitators should consider in all interactions with people living with dementia. The principles include things such as seeing the person, not just their disease, as well as giving the person a voice, which may entail working within each individual’s strengths.

“Regardless of the stage of the person with dementia, they have a voice [and] need to be listened to,” says Quaid.

“Sometimes they might go off on a tangent or stray from the topic, but if you listen, there are little gold nuggets. It’s so important that they’re not dismissed. And I think that’s the core of Hear Our Voice!”

It is also essential to remain flexible. Individuals may have better and worse days or times of day; working within those needs as much as possible can help ensure meaningful contributions.

Also, never make assumptions about what dementia looks or sounds like—dementia can vary greatly on an individual basis.

       The First National Meeting of the Irish Dementia Working Group

Venue and involvement

There are several things one can do to ensure a venue is accessible and inviting to people living with dementia.

Having someone to greet participants at the building entrance helps point participants in the right direction.

Double-checking that there is signage to and from the washrooms is critical.

If the event is being held virtually, ensure that the person with dementia has internet access and test it with them well before the start time.

It’s also important to try and start meetings on the hour; this is easier to remember than meetings that begin at quarter past or quarter to the hour.

Quaid recognizes that many of the suggestions aren’t exactly complicated, yet they aren't always obvious.“It’s so simple that it’s often the thing that’s staring you in the face that you miss,” says Quaid.

“It all makes common sense, but ‘common sense is not that common,’ as my wife often says.”