Learning that a loved one has dementia is a distressing time for many families. For some, the news brings a sense of loss and elicits feelings of heartache. These feelings are often compounded when trying to learn about the disease and develop a care plan.
Managing the changes in your loved ones behaviour while trying to manage these obligations, as well as your own, can only make the situation seem unsurmountable. It is important to know, you are not alone and there is help available.
According to Australian Institute of Health and Welfare, more than 1 million people are caring for someone with dementia. We recommend starting simply with writing a list of the priorities your feel are important and try to manage them step by step.
Some of the families we talk to suggest some key things to consider:
- Develop a communication approach that will enable you to talk openly with your family member about the process of change, and what care your loved one will prefer, if, and when it's required.
- Look at what a safe living environment might involve, from accessing the home, to what changes internally might need to be made to prevent falls or injury.
- Start identifying changing behaviours and make a note of them for each medical appointment.
- Think about how you might manage behaviours of concern and identify what external support might be needed.
- Provide mind stimulating activities to prevent social isolation.
- Think about how you might supervise daily activities.
- Develop a personal care plan for the home.
The following resources might also help to get some clarity:
- Contact Alzheimer's Australia www.fightdementia.org.au. This is invaluable for its extensive resources, education tools, and helps you to find support groups.
- There is a National Dementia Hotline, which is 1800 100 500.
- Rally around community groups, and encourage your loved one to become part of the experience, if able. This year Alzheimer's Day falls on June 20, 2016. Make sure to pop it in your diary.
- There are some books written by dementia sufferers which provide insightful perspectives, for example, 'Losing My Mind: An Intimate Look at Life with Alzheimers', by Thomas Debaggio, and 'Dancing with Dementia: My Story of Living Positively with Dementia', by Christine Bryden.
Without wishing to be prescriptive, as each person’s journey is unique to them, we find it is helpful to reach out to family, friends and the community for support. The more resources you can gather, the better you can manage the process of change.
As the following proverb reminds, “A worry shared, is a worry halved.”