Can people live well with dementia?
I believe that people can live well with dementia if the people supporting them understand the disease. Caring for someone living with dementia can be emotionally and physically challenging and it is easy to become frustrated and resentful. But I believe the more you understand dementia and the associated symptoms, the better prepared you will be to provide the best environment, support and care, reducing caregiver’s burden. I know from our experience with Mum that if you don’t know what you are dealing with, then often your actions, however well intended, can result in paranoia, a loss of confidence and negative changes in behaviour.
If you understand that aggressive behaviour from someone living with dementia is usually as a result of pain, confusion, fear or embarrassment then you can address the cause of the behaviour rather than react to it, which will only exasperate the problem. If you understand why these changes happen, you will be more objective and your reactions will be much more positive.
If your loved one forgets your name, you need to understand that it’s because the part of the brain associated with memory has been damaged, not because they no longer have an emotional connection or benefit from spending time with you.
People living with dementia find it easier to retrieve older memories than new ones and so tend to regress to the past. Once you understand that they can no longer remember the present (and trying to make them will result in embarrassment and a loss of confidence) then you can learn to enter into their reality and continue to engage in meaningful ways.
If you understand that while people with dementia struggle to communicate, they still want to feel included and valued, just like anyone else. And like everyone people living with dementia react to the actions, mood and tone of voice of those around them. If you are irritable, dismissive and constantly correcting or belittling them, they will react with frustration and anger or they may completely withdraw. If you are kind and inclusive then generally they will respond likewise, although problems with communication can sometime make this difficult, they will try and this should be recognised and not ignored.
If you understand that loud, busy environments such as shopping arcades or pubs and restaurants can be overwhelming and even frightening for someone living with dementia (and taking them may result in changes in behaviour) then you can plan to visit at less busy times and you can provide extra reassurance.
If you understand that people living with dementia often become more confused and agitated in the late afternoon or early evening, a common symptom known as sundowning, then you can plan accordingly and introduce measures to reduce the impact.
If you understand that people with dementia can experience hallucinations that are very real to them and trying to convince them otherwise will lead to distrust, paranoia, fear, anger and isolation, then you can adapt your approach and perhaps try distraction rather than confrontation.
I also think it’s important that carers are not embarrassed about their loved ones diagnosis, symptoms or behaviours. If you are embarrassed then you are likely to undermine the person living with dementia by finishing their sentences for them or getting into an argument about whether their jumper is on the wrong way round. If you understand that any negative reactions from people is due to their ignorance rather than you’re loved ones actions, then you can try to educate rather than retaliate.
I realise that all of the above is much easier said than done and they are things that I now understand but didn’t at the start of our journey. But I truly believe that many of the challenging symptoms we had to deal with, arose because of our behaviour rather than Mum’s. I know that the more I learnt about dementia, the more I relaxed, I stopped worrying about the little things and the more positively Mum responded.
It is for this reason why I am so passionate about raising awareness about dementia so that we can remove the stigma, the fear and the embarrassment and we can all help people living with dementia to live better, happier lives.