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If you have a family member living with dementia, you are likely to need to have a conversation about care. It is always preferable to have conversations as early as possible whilst the person still has capacity and is able to articulate their preferences.
However, future care planning is often not discussed, which can make later conversations even more difficult when dementia care is required.
Additionally, opinions can often differ when there are several people involved in these care discussions, even though the person’s best interests are at heart. In this three-part series of blogs, we will look at how to start the conversation about care, the types of care services available and what good care looks like.
Preparing for the Conversation About Dementia Care
Think about who the conversation is with and the relationships between those involved. It is important to understand each person’s view of what is currently needed and why.
A direct family carer may have a very different view of day-to-day needs from a relative who visits monthly. Remember that whilst the conversation should be centred around the person living with dementia, the carer perspective and feelings should also be respected. Family members may all be experiencing differing emotions which can make discussions difficult. Directly involved carers may feel stress and exhaustion if they have been managing alone and may feel resentment at being put into a caring position. Family who live further away and are unable to support more may feel guilt.
When approaching the conversation about care, keep in mind:
When: Wherever possible, start the conversation about care early. This gives the person with dementia time to get used to the idea, consider what they may need practical support with in the future and think about what that support might look like.
Where: Pre-arrange a time and place where all involved will be relaxed and not distracted. Make sure everyone is aware that the conversation will be about dementia care planning and ensure that it is a familiar place and suitable time of day for the person with dementia.
Boundaries: If you already have experience of family discussions that have been difficult, set boundaries at the onset so that the conversation remains positive and on track. For example, agree to end it if it is not constructive or if anyone gets upset.
Time: Set a time limit on the initial discussion to keep the conversation on track. Allow people time to reflect and consider options, even if this means pausing and continuing the conversation a different time.
Prepare: Start prepared with an understanding of what the potential current and future challenges are and what dementia care options could resolve these.
The Conversation About Dementia Care
Being aware of some of the following will make for a more positive and productive conversation:
Include the person with dementia
If the person with dementia has capacity and is able to communicate then they should be involved in any conversation around their care. They may not be able to make final decisions around care but might be able to state their preferences. Simply being involved in the discussion will help them feel in control and that their views are important. Any decision made by family members or by an attorney must always be in the person’s best interest, and their views must always be taken into account. Remain sensitive to how they may feel emotionally about needing dementia care and try and consider it from their perspective.
Conversation pointers
It can be helpful to have a set of questions or topics that can direct the conversation and enable everyone involved to participate and express their views. It can also be useful to have some actual scenarios to discuss, such as an example of something that is important to the person which they are currently struggling with and then discuss possible solutions which would improve the situation.
Dementia Care Options
Start by discussing low-level interventions and focus on supporting the person in the areas that are most important to them. For example, introducing a carer that can take the person to an art class may initially be more amenable to them than someone coming to shower them. Conversations around increasing dementia care can then be had as they become more comfortable. Different care options will be discussed in the next blog.
Focus on positives
If the conversation shifts or becomes difficult, refocus by bringing it back to the person with dementia. Keep in mind that the purpose is to improve their situation, and their best interests are at the centre.
Not everyone will agree on everything but try to think about the positives in the discussions; focus on points that were agreed on, even if that is just that dementia care is needed. For the person with dementia, focus on the positives that care can have, such as reducing isolation and helping the person remain independent for longer with support.
Create Actions
Agree to follow up after the discussion with any relevant information, research or planning. Ensure that everyone feels involved and understands the next steps. This will also support the next conversation.
Conversations around dementia care can be tricky and it is important that the person with dementia does not feel a loss of control or independence. With careful planning, sensitivity and starting early, these conversations can be a positive way to enable the person to understand and accept the many benefits of introducing care.
If you would like further support and guidance on starting the conversation about dementia care, then get in touch with a member of our Wayfinding team on 01243 888691 or email info@dementiasupport.org.uk.