Section 4
4. Explain about dementia Remember to refer back to what the person/relative has already said and clarify the level of detail the person wants. The information shared should be related to the persons wish for information and associated co-morbidities. • Stress the uncertainty and individual nature of presentation of symptoms. • Explain the cognitive decline and the functional decline associated with dementia. • Describe the indicators to influence it’s progression. • Discuss the prognosis and average life span after diagnosis. • Pause regularly to allow the information to be processed (11,15,19,23,72). 5. Allow space for emotions • The person with dementia and their relatives may be upset, shocked and angry by the content of the conversation. • Allow space for emotions and acknowledge strong reactions. • Help the family to give a name to their emotions. 6. Discuss care options (also see section 4) (This step may require a second meeting depending on how the person and their relatives respond to the initial discussion about dementia). • Clarify the person’s hopes, wishes and fears for their future care. • Explain that care should focus on the person’s comfort, drawing distinctions between benefit versus burden and explain comfort care. • Explain the limitations of some treatments with advanced dementia. • Outline a future plan of care for the person. • Discuss scenarios/complications which are likely to arise considering their health and specific situations (i.e. tube feeding, cardiopulmonary resuscitation, antibiotics and admission into hospital). • Clarify that their wishes will inform their care but stress that one cannot guarantee that all of their requests are followed as this may be dependent on available resources/capability of family/carers and other variables.
I understand that you would like to know more about the progression of your condition. Dementia will affect each person in a different way but we know their abilities will decline. As dementia progresses, many body functions are affected and people can lose the ability to walk, talk and swallow normally. This means they are more at risk of problems like pneumonia.
We have noticed that lately your mother is not eating and drinking as much and is losing weight. She also dislikes getting out of bed and sleeps most of the day... and unfortunately these are signs that the dementia is advancing.
I can see that you are very upset.
I wish the situation was different.
It would help me if I could hear what you are worried about and what you would like or what you don’t want to see happen?
Let’s write down some of those things so that we can make sure they are an important focus of your care
While dementia can’t be cured, we will do everything possible to make sure that your relative has the best quality of life and that their comfort and dignity are supported and maintained.
It is very helpful that we understand what is important to you and your wishes will certainly inform all decisions that we will make about your care, and we will do our best to make sure these are fulfilled. It is useful to clarify at this point that the medical team have ultimate responsibility for your care.
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Facilitating discussions on future and end-of-life care with a person with dementia
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