Talking to Families About Dementia Care

Updated on June 7, 2022

Dementia care won’t be the hardest conversation that you have as a healthcare professional, but it’s still one that you definitely want to go well – and you’ll find that it is often the patients that are easier to persuade than family members. 

The patient has likely been living with the difficulties of dementia for some time, and although there will certainly be a mixture of emotions, one of them (even if it is not the dominant one) will be relief. 

With families, the conversation may stray into unresolved and unhelpful issues, such as denial and frustration that can manifest as anger or despair. As such, keep the following principles in mind as you navigate these tricky waters.

Don’t Take it Personally

A dementia diagnosis is not just a patient diagnosis; it’s a family diagnosis. That is to say, the symptoms that affect your patient are felt on a relational level as well as a personal one. Family members with strong feelings may arrive on the scene unexpectedly, but remember, as difficult as they are being, the core issue that they’re having isn’t with you. 

Oftentimes, it’s even not about the patient – it’s about the family members. If they are resistant to you, hostile, or even just confused and scared, your first goal is to get them into a receptive state – and that could mean a change of setting or a five-minute break so that they can collect themselves. 

The standard, basic responses of fight, flight, or freeze will be in play here, so you need to tread lightly in their heightened emotional state. Remind yourself: they wantanswers and reassurances, otherwise, they wouldn’t be talking to you – the professional.

Get Everyone On The Same Page

This can be tricky. Unless you have seen the family members before and you know that they have walked alongside your patient thus far, you will not know where everyone stands. You will need to get new family members to speed – family members who may be struggling in the situation both in terms of what dementia is and what care the patient will be receiving. 

It is not unusual to bounce between the general and the specific. ‘What does this diagnosis mean?” versus ‘What are you doing for my loved one?’ are the two most important questions that will need answering. Be responsive to the family members, but don’t let them dominate the conversation either. They want to trust your authority, so be authoritative – especially when it comes down to explaining the transition into care as their loved one loses their independence in the later stages of the disease.

Send Them Away With Resources

It’s a lot for them to process, and they may not be able to process it all fully in the time that they’re with you. If this is the case, they will very much appreciate you sending them away with information that they can read and investigate at their own pace. 

This will most likely cover resources for their general concerns – such as the differences between Alzheimer’s and Lewy Body dementia treatment and what the plan entails – or practical issues like what their role as a caregiver will now entail. In addition to printed material, have an email packet ready with links to resources that you can send to them. 

Keep To Your Schedule – But Be Sensitive To Theirs

Your first duty is to your patient and not their family. Still, getting the family onboard is often the best practice care for your patient. Keep yourself and them focused on this fact, and if the family needs time to go away and come back, offer them times, an official appointment, or an informal time period so that you all can meet again.

Being prepared by collecting information beforehand and anticipating questions and concerns will mean that there are fewer queries to field and will make your care efficient and effective.

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