Whether it is a spouse or parent, the news that a loved one has been diagnosed with dementia can be devastating. Lyn Beasy* tells us how to support our loved ones, reminding us that they are ‘more than their symptoms’.
Mother Teresa once said, ‘It’s not how much you do, but how much love you put into the doing.’ This can be said of caring for a loved one with dementia. This illness affects more than 350,000 Australians and a further one million are involved in the care of these people. More common after the age of 65, dementia has been known to affect people in their 40s.
There can be significant personality changes in dementia sufferers, such as becoming more aggressive, fearful or agitated. There can also be behavioural changes, including wandering, confusion, forgetfulness and restlessness.
However, keep in mind that this person is more than their illness and symptoms. Putting ‘love in your doing’ is recognising that you can’t control their behaviour, but you can change your behaviour and attitudes towards the situation. You can also make changes to your physical environment to help them feel more secure and comfortable.
In a marriage, it is confronting to relinquish the role of being a partner and becoming a carer, as those familiar ways of connecting slip away. You may experience denial and feelings of grief as you try to find a new normal. If this is you, then meet your loved one in the now during the early stages of the disease.
It can be hard to accept that you can’t change the person back to who they were before the dementia. But instead of trying to resist the change, continue behaviours that reinforce your special connections and encourage your loved one in the things they can still do.
Use every method of communication to reach your loved one. Music, art and dance are wonderful avenues of reminiscing. Hearing favourite music from a part of personal history can bring a person back into the present and create a rewarding and precious memory for you both.
While caring for a loved one with dementia, it is easy to overlook your own needs. Responding to repetitive questions, coping with changes in their sleep/wake cycle and increasingly agitated behaviour and wandering can quickly become draining on your patience.
It is important to seek out support or respite for a few hours, so you can go out alone or engage in a pastime to minimise the risk of burnout. Furthermore, look for simple tasks that the dementia sufferer can engage in that will benefit you around the house. This will also help them to feel more needed and useful.
Remember you are not alone in this journey. There are many helpful support groups, online forums and information available from your GP, allied health professional or dementia support agencies that can give you practical advice and normalise this experience.
*Lyn Beasy is a psychologist at the Caringbah Wellbeing Clinic.