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The later stages of dementia can be difficult for both the person living with dementia and carers.
At this stage, the person with dementia will often need full time care and support with all day-to-day tasks. As dementia is a progressive and terminal condition, it is often helpful to understand what lies ahead.
There can be many challenges and changes to navigate, so how can you support someone in the later stages of dementia?
In this article, we spoke to Dementia Advocate James about how he supports his wife Linda through the changes and challenging behaviours as Linda’s dementia progresses.
Note – this story discusses the later stages of dementia which can be confronting for readers. If this article brings up any strong emotions, or you would like support, please call us at any time on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.
Understanding and acceptance can change your perspective
It can be difficult for carers to watch changes happening to their loved one in the later stages of dementia, but understanding and accepting that changes will come is an important step forward and ensures the person living with dementia receives the care and support they need.
For James, understanding and accepting that changes would come helped him to maintain a better outlook through the difficult times.
“Through getting an understanding Linda’s form of dementia, I knew that her condition would deteriorate,” James said.
“As Linda’s capabilities were diminishing, asking ‘why is this happening?’ was not going to help either of us. Instead, as a challenging behaviour presented, I would ask myself ‘How do I best manage and support Linda with this?’
“This small difference in phrasing changes perspective and helped to work through one behaviour at a time. There were without a doubt hard times, and my daughters and I have had to make some incredibly difficult decisions but ultimately acceptance and dealing with situations as they presented helped, and continues to help us work through each one.”
Dementia causes changes. Your loved one is still your loved one.
Symptoms in the later stages of dementia may be challenging and not what you expect from your loved one. Remember these changes or behaviours are related to how dementia affects the person and are not deliberate or intended to hurt or offend anyone.
Despite a dementia diagnosis and the changes that it has brought, James shared the importance of always remembering your loved one for who they are.
“Upholding the dignity of the person is of utmost importance – that person is still a person,” James said.
“Even though Linda’s capacity has diminished, she is nevertheless an intelligent person and still requires forms of stimulation that are of interest to her.
“She loves stories and poetry, and when others engage with her through reading and conversation, she lights up and you can just see that she thoroughly enjoys that engagement.
“Being empathic through the changes of dementia can make a huge difference – asking who is this person? What is their history? What lights them up?
“I encourage others to avoid assumptions and not to assume that changes due to dementia means the person doesn’t need stimulation or engagement. They are still a person who can feel emotion and need fulfilment.”
Caring for yourself is also important
Caring for someone with dementia can be rewarding. It can also be difficult, emotional and at times, overwhelming. Looking after your own wellbeing is just as important as caring for a loved one.
James has experienced a huge sense of grief and loss throughout his experience caring for Linda. He said sitting with his emotion and finding ways through it has made him a better carer.
“In the later stages of dementia, while one is working through the challenges of dementia, there is an immense loss and grief issue,” James said.
“I describe it as a relational rupture. Of course, grief and loss makes sense, for me the relational rupture is the uncoupling of a 40 year companionship.
“You can’t stop the grieving; it is a natural process and one that you must work through.
“What enables a carer to come through that overwhelming emotion, is to truly feel emotion, doing something for themselves and identifying what one is grateful for. I have been writing things down and writing poetry about what Linda and I have shared over our 40 years.
“Profound gratitude and being grateful, has helped to move through the overwhelm.”
How do I get support?
Caring for a loved one with dementia can be challenging at any stage.
If you need support, information or just someone to talk to, we are here for you.
Call the National Dementia Helpline on 1800 100 500. We’re here 24 hours a day, seven days a week, 365 days a year.
Want to read more? Check out these articles:
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Can you plan your own death? Despite the possibility of worsening symptoms as time progresses and as a person nears the end of their life, is it possible to die well? And what could this even look like?
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