In Australia there are more than 400,000 people living with dementia. Dementia isn’t a single condition, instead it refers to a range of symptoms associated with a loss of cognitive ability (memory, thinking and behaviour skills). Dementia occurs when brain cells are damaged and have difficulty communicating with each other. When this happens, it can be a very scary and confusing period of time for the person experiencing the symptoms and for their loved ones. Because behaviour and personality can be so greatly affected, when a diagnosis of dementia is made, it isn’t uncommon for there to be a sense of relief alongside the worry and concern.
Whilst caring for someone living with dementia can be a rewarding and positive experience, it can also be physically, emotionally and financially challenging. A recent study conducted by Dementia Australia found that 80 percent of those caring for someone living with dementia were required to make changes to their employment in order to continue providing quality support to their loved one.
Dementia is a progressive condition and many carers find themselves reducing the hours that they work, or stopping work altogether. Dementia Australia’s survey discovered that for many carers, going to work provided an outlet and often a welcome relief from home life. As the hours of work became less, stress and mental health were negatively impacted and some carers needed to seek alternative support.
Caring for a loved one can feel isolating but you’re not alone! We recommend joining a support group and sharing your experiences, both rewarding and challenging, with people who are in a similar situation to you. Listening to others’ stories can really help, giving you tips and advice, or allowing you to help by offering yours.
If you’re just beginning your journey caring for someone with dementia, here are some tips on how to approach things.
1. Learn As Much As You Can
There are many different types of dementia, each with different symptoms and progressions. The more you can learn and understand about the type of dementia your loved one has, the better you can prepare to care for them. Learning about the different tasks of a carer will ensure that you aren’t missing anything (like scheduling medical appointments, or preparing well-balanced meals).
2. Ensure The Environment Is Safe
People living with dementia are prone to falls. If possible, allow them to live in their own home surrounded by familiar things for as long as you can. Don’t move furniture around; try to keep things the way they are. One caveat to this is to remove any floor rugs, cords or general clutter that may become tripping hazards. Safety comes first! The addition of handrails, shower and toilet chairs, and night lights may be necessary depending on the stage and progression of dementia.
3. Give Your Loved One As Much Responsibility As You Can
Unfortunately, living with dementia comes with a great loss of independence. This is perhaps one of the biggest challenges for those who are diagnosed with the condition. Allow your loved one to continue to do as many things for themselves as is safe, even if it takes a long time or several false starts. Try not to get impatient and intervene; it is important that they feel that they still have some sense of control.
The responsibility of finances should be discussed as early as possible. Deciding who and how finances will be managed is vital, and allowing your loved one some control over their own money is also important for self-esteem and a sense of independence. How much control, if any, will depend on each individual situation.
4. Use Respite Care
To care well for someone else, you must first care for yourself. An exhausted and burnt out carer isn’t a great help to anyone! Before you get to the stage where you feel like you have nothing left to give, make use of respite care. Many carers feel guilty engaging respite services and that guilt is natural and hard to avoid. However, giving yourself even one day of respite in which your loved one spends time being given quality care by someone else can make a world of difference, leaving you refreshed and energised.
5. Carve Out Time For Yourself
Aside from using respite care, try to carve out some time each day in which you can do something for yourself. Whether that is going to the gym, reading a book, or pottering around in the garden, it is important for you to have time where you are relaxed and can set aside your ‘carer brain’.
Making use of professional carers may be a good option for you to have some ‘me time’ while feeling comfortable that your loved one is being looked after. Does your loved one have a Home Care Package? If not, apply for one now. In the meantime, hopefully you have another family member who can step in for an hour or so each day to allow you to do this.
Thankfully, there is great support available for those caring for someone living with dementia. Visit Dementia Australia’s support page to get started.
If this story has prompted any questions or concerns, please call the National Dementia Helpline 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au.