Dementia Care Demands a Big Toll

Working at Tamahere I meet many families of people with dementia. Whether their loved one is at home or living in our care home, they all find the dementia journey incredibly difficult.

It’s hugely painful to watch someone you love gradually lose the ability to think clearly, to control their emotions, to make good decisions and even to remember who they are. People can change in unexpected challenging ways and this is a cause of grief and loss.

As the disease progresses and symptoms become worse, families often struggle to keep loved ones at home. They are constantly on watch to keep people safe and sometimes their own mental and/or physical health suffers. When decisions need to be made about a higher level of care, they frequently feel distressed and guilty.

The dementia journey can be a very lonely and isolating experience. The nature of the disease means that whānau with dementia often become reluctant to socialise. They feel safer in familiar environments. Too many people or too much stimulation can make them feel overwhelmed. As a result, carers can also become isolated.

Sometimes friends and even other family members fall away. Some people are scared by the changes they see. They would rather remember someone as they were, not realising that that person is still there. Others simply don’t understand. The dementia journey is so difficult that it’s hard to understand unless you’ve had experience of it yourself.

All of these things mean that carers are under huge pressure and need support. Last year at Tamahere we started a support group for the families and friends of whānau living with dementia. We meet every month and offer people a space where they can share their experiences, hear from staff and other health professionals, ask questions, learn how to navigate the available support services and most importantly talk about self-care.

Self-care isn’t easy but, as those who’ve been on the dementia journey the longest know, it’s essential if carers are to stay well. Members of our group encourage each other to take regular breaks, explore day programmes for their loved ones or respite care, look after their health and stay connected to friends and family. They know from sometimes hard experiences that they can’t care for whānau if they aren’t taking care of themselves.