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Advance care planning in dementia - a difficult conversation?

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There is much debate on when is the best time to offer advance care planning to people with dementia. I would say as soon as possible after the diagnosis of dementia is made.  Many professionals feel that getting people with dementia to start thinking about their end of life care wishes is both too soon and insensitive within the diagnostic process. Planning for end of life needs to take place early in the course of the disease process, while the person has sufficient mental capacity to consider their preferences and make decisions, not the focus of this blog, but a timely diagnosis of dementia whereby they still have capacity to make plans for their future is essential.

In my research and studies I have found families affected by dementia only too willing to engage in such discussions, so who is the conversation difficult for?

Good, effective communication is essential in enabling advance care planning for anyone with a life-limiting condition but perhaps even more so for people with dementia.  Communication is a two way process but in people with dementia their ability to communicate with others and to receive their communication becomes increasingly difficult as the condition progresses.

So there are several tips and pointers that may help you to see things from the perspective of the person with dementia and their families:

Give me time…..

1. It may take me longer to process what you are saying to me and to think of their response - give me sufficient time to respond to you. Only ask one question at a time and try to avoid open ended questions as these can confuse me further and limit my ability to respond to you. Some people mirror what I say (repeat back to me) to confirm what it is I am saying.  This is helpful to me as confirms with me that I have been understood and also to feel in control of the conversation.

What is important to me is….

2. Ensure a person-centred approach try and help me to describe my values and preferences; this is a good way for you to start a conversation on advance care planning; what is important to me (and my family); my personal history, likes, strengths, beliefs, etc.  This can also help when starting to think about a Lasting power of Attorney.

How you should approach me….

3. Face me directly and make good eye contact with me, this gives me every opportunity to understand you are focused on me and helps me to communicate. Please use short, clear sentences with me that are free of jargon and ‘clinical speak’ and use language and words that are familiar to me.

Yes, I have a family but….

4. I may, or may not, wish my family carer/member to be present; ensure you ask me and never assume.

Familiar space….

5. Ensure the space chosen to have the conversation with me is quiet, calm and free from distractions. Actually, my own home or familiar surroundings is best.

Actions speak louder than words….

6. Be aware of and maximise upon your non-verbal communication: tone of voice, facial expressions, hand gestures, etc. These will all help me to better understand what is being said to me.  Also be an ‘active listener’ and be fully attentive to my body language and expressions as well as what I am saying to you – sometimes they may not convey the same meaning.  Lastly you can use other ways to communicate with me if I am finding things difficult – try word cards or pictures (e.g. www.talkingmats.com/).


Other useful resources

A useful resource to guide into what to ask and how can be found in the NCPC brief guide on Difficult Conversations for Dementia: www.ncpc.org.uk/

AFIRM is a framework to guide professionals in holding difficult conversations and to use these as opportunities to discuss any apprehensions or queries the person with dementia (and/or their family member) may have.

Acknowledge the persons concern or questions;

Find out what the person knows about the condition;

Immediate concern(s) addressed by providing adequate information within the scope of your work; Respond to subsequent questions by providing accurate information within the scope of your work and a

Meeting suggested to discuss their concerns with significant people, such as, a clinician, care coordinator, GP, family member(s), legal representative, etc. HSE. The National Dementia Training Programme. https://www.hse.ie/eng/about/Who/ONMSD/eductraining/dementiaeducation


Admiral Nurse Dementia Helpline. If you have any questions about dementia or if you need advice and support from an Admiral Nurse please contact our helpline: Telephone 0800 888 6678 or email: helpline@dementiauk.org



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