Support, guidance & advice for todays primary carers
From accessing support to practising self-care, here’s everything you need to know about caring for someone with dementia
The later stages of dementia can be difficult for both the person living with dementia and the carer caring for someone with dementia.
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’s often helpful to understand what lies ahead when it comes to caring for someone with 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 the National Dementia Helpline 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 to caring for someone with dementia and 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, when a challenging behaviour presented itself, I would ask myself ‘How can I best manage and support Linda through 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 arose has benefited us all, and continues to help us navigate through each issue as and when it arises.”
Dementia causes changes. Your loved one is still your loved one, however hard it is to be caring for someone with dementia.
Symptoms in the later stages of dementia may be challenging. 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 caring for someone with dementia and 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 connection.”
“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 presume 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 make sense, but 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 for caring for someone with dementia?
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.
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