Create a strong support system
Dementia is usually a long-lasting condition. Emotional and practical support is something you will both need over the long term. Think through who you can call on for support and make a list. Different people will be able to offer different types and amounts of support. Consider who you can call on regularly and who to call on in an emergency. Here are some suggestions to start you off:
- Your family, your friends and neighbours.
- A dementia or carers’ support group (ask about useful supports others have found).
- Health professionals, including your doctor, the person with dementia’s doctor, the practice nurse, specialists and other dementia support health professionals e.g. dementia advisors or navigators, occupational therapists, social workers, psychologists and counsellors.
- Community service supports, including NDIS, aged care services, in- or out-of-home respite services, reablement (rehabilitation) services, local government services e.g. transport, visiting libraries etc.
- The National Dementia Helpline 1800 100 500 can provide emotional support and guidance.
- Dementia Support Australia 1800 699 799 for help with symptoms of changed behaviours.
Be aware that some friends, and even family, that you may expect support from simply fall away. Sadly, this is common experience. Other articles in this section of the website go into detail about reactions of family and friends to the diagnosis (article 2.7) and how to tell other how you want to be supported (article 2.12). <internal link to YOD 2.12> If you need, talking to Dementia Australia or counselling professionals about these experiences can be beneficial. On the other hand, many carers have told us they have made new friends through dementia networks and others have told us that family relationships have become stronger.
Carers, plan so you don’t become exhausted
Use the support system you have identified to help you. You should not expect to do everything yourself. When you come across a new issue or problem talk to others in your support system. Ask for help before you become exhausted and practice accepting assistance when it is offered. Consider a break away for a few hours, a few days or even a week or two on a regular basis to “recharge your batteries”.
Practice self-care
Looking after your health and well-being is a priority. Ensure that you have check-ups with your doctor as required, a healthy diet, adequate exercise and sleep. Try writing down three things that give you pleasure. Pin this list on the fridge as a reminder and make sure you do these on a regular basis. Make sure that you keep up your social contacts. If you can’t do this in person, try calling on the phone or catching up online using Skype or Zoom.
Get help with symptom management
Changes in the person with dementia’s function or personality can be physically and emotionally stressful and is a contributor to carer depression. Get help early to understand why symptoms might be occurring and how you can effectively manage symptoms. The next section of this website (Managing changes) provides more information, strategies and techniques that may be useful.
Get support early
- Think though who you can call on for different types of support and make a list.
- Practice saying “yes” when people offer to help. Remember also that people are often very willing to help, they just need to be asked!
- Telephone Dementia Australia 1800 100 500.The free counsellors at Dementia Australia will listen and help you make sense about your feelings about dementia.
- Telephone Dementia Support Australia 1800 699 799.This Australian Government funded, free 24/7 telephone service can help you understand and manage personality or behavioural changes.
- Carer Conversations a nationwide network of support groups for those who are caring for someone living with fronto-temporal dementia.
Photo: Vonecia Carswell via Unsplash.
