Receiving a diagnosis of dementia is difficult, but planning ahead can help an individual’s experience of the condition to be as positive as possible.  

It is likely that a person will live for many years with dementia and, for the most part, these can be lived well. But the prognosis for each person is unique and decisions relating to care during the later stages are best taken early to ensure that they receive the kind of care that is right for them and their loved ones. 

Advanced Care for Dementia: Considerations 

It can be very difficult for a recently diagnosed person to start thinking about end of life care, particularly when they are continuing to live busy and fulfilling lives. However, dementia slowly denies an individual the ability to think, reason and remember which is why it is so important to put these advanced care plans in place sooner rather than later. 

Considerations include: 

  • How they’d like to be cared for in the final months of their life 
  • Where they’d like to be cared for  
  • Who they’d like to be with them 
  • An advance statement – a written statement that sets down their preferences, wishes and beliefs 
  • An advance decision – a written statement that allows them to refuse a specific type of treatment in the future 
  • And a lasting power of health and welfare attorney, and property and financial affairs attorney 

Not everyone will want to plan ahead in such detail, but having an understanding of your loved one’s wishes is important in the event that you will have to make decisions for them.  

Initiating these discussions can be uncomfortable but incorporating them in more general conversations is a useful way of learning their views and may even prompt them to put in place more formal planning. 

Communication challenges associated with dementia 

As the dementia progresses, a person will gradually lose the ability to process information and so will no longer start as many conversations. When they do engage, their responses will become increasingly delayed.  

Encouraging your loved one to communicate 

  • Speak clearly and slowly in short sentences 
  • Make eye contact 
  • Give them enough time to respond 
  • Let them speak for themselves 
  • Always acknowledge what they say 
  • Give them simple choices 
  • Listen more carefully 
  • Try not to interrupt them 
  • Give them your full attention 
  • Reassure them 

Recognising when Advance Care Planning will need to be Considered 

As individuals living with dementia reach the later stages of the condition, they will probably no longer speak or, if they do, it may be only one or two words. They will not be able to move unaided and they will certainly require help with most basic activities, such as eating and drinking.  

By this stage, most of the decision-making relating to care will need to be done by a loved one, but if an advance care plan has been made, the individual’s wishes will very much be taken into account. 

With further deterioration, possibly including loss of consciousness and difficulty breathing, it is likely that an individual’s final wishes about where they want to be and with whom, will need to be considered. Without advance planning, decisions will have to be made on an individual’s behalf by healthcare professionals and loved ones. 

 Experienced Home Carers 

If you are caring for a loved one with dementia, Assist Care Group has experienced home carers specifically for dementia. Get in touch with our team for more information.  

For more information on advance care planning, visit the NHS dementia guide.