Dementia is distressing but may not mean your loved one has forgotten you

Dementia is distressing but may not mean your loved one has forgotten you.

Dementia is distressing but may not mean your loved one has forgotten you. - Credit: PA

The true cost of losing someone to dementia starts before family members say their final goodbyes – it is watching the agonising demise of the person they love right in front of them.

Anticipatory grief can feel just as intense as the grief felt after a death, and often leave relatives and friends struggling to come to terms with sudden, significant changes in the person who has dementia. 

“When a family member or close friend has dementia, you may experience loss even before they have died,” leading charity Dementia UK says. 

“You may find that your relationship starts to change and you find it hard to recognise the person they once were.  

“You might experience a sense of loss that the person no longer feels physically or mentally present with you.” 

Dementia can take its toll in various ways and lack of awareness surrounding the condition doesn’t mean that one person’s experience with it will be the same as others. 

One man from St Ives, who wishes to remain anonymous, spoke about the “long and distressing journey” that his family went through when his father had dementia.  

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He had been cared for “superbly” in a local care home before he sadly passed away in 2018. 

“It was a long and distressing journey for him and my mum, as well as for the whole family,” the Hunts Post was told. 

“But we learned so much along the way, especially about the symptoms of dementia and how to live with and adapt to them. 

“One thing I found frustrating was that when I told someone for the first time that dad was in a home suffering from dementia, they would invariable ask: “And does he still know who you are?” 

“It was as though, in the minds of folk who were only trying to be kind and caring, the measure of the disease's progression is simply whether the person can still identify their loved ones. If they can, it wasn’t that bad as it were. 

“Thankfully, dad always knew who we all were, never became aggressive and never wondered off anywhere.  

“But his body slowly forgot how to function, and his brain could no longer process information or follow commands.  

“He was a happy, cheery man to the end and was loved by those who cared for him for such a long time.” 

Dementia UK says that difficulty with recognising familiar people does not happen in all types of dementia - but that doesn't mean the condition isn't just as severe.

“For some people with dementia, the gradual loss of recent memories means the person may still remember you, but they could expect to see a younger person in front of them,” they add. 

“If you can, try ‘entering into their world’, and asking the person diagnosed with dementia about how they feel. 

“Talk about happy memories and events that are important to them.” 

Dementia can feel like a new, confusing, alternative world to the person suffering, so to make sure not to alarm or surprise them can be key. 

The charity advises that family and friends should "keep in the person’s eyeline, and try not to suddenly appear from the side or from behind".

"Speak clearly and in short sentences and try not to correct the person if they get your name wrong or say something that isn’t true - as this can lead to distress and frustration for everyone."

Anything you both enjoy can help you feel closer, such as: 

  • Playing some familiar music 

  • Watching a favourite film 

  • Drawing pictures 

  • Going for a walk and talking about the things you see on the way 

  • Flower arranging 

  • Doing a jigsaw puzzle, if possible 

If you have any questions about dementia or if you need advice and support, contact the Dementia UK helpline on 0800 888 6678 or email