The task of living with or caring for someone with younger onset dementia can be difficult, and at times feel overwhelming.
However, there are a number of organisations which provide services to help both the person living with dementia and their carers continue caring for people with dementia at home.
Carers who are able to take some time out and receive services to assist them are often able to cope better in their caring role, and therefore the person they are caring for is able to stay at home for a longer period of time. It is essential to ask for, and accept help.
Some services, although aimed at older people, will also work with people with younger onset dementia and their carers. There are currently few specialised services specifically for people with younger onset dementia, although services are improving.
Getting the information you need
Finding out about younger onset dementia and the immediate help available is usually a priority soon after a diagnosis is made.
Dementia Australia can help you learn what is happening, provide emotional support, information, education and counselling. Contact the National Dementia Helpline on 1800 100 500.
Commonwealth Carelink Centres provide information about the range of community care programs and services available to help people stay in their own homes. Contact your closest Commonwealth Carelink Centre on 1800 052 222.
Commonwealth Carers Resource Centres provide carers with information and advice about their caring role and about relevant carer services and entitlements. Contact your closest Commonwealth Carers Resource Centre on 1800 242 636.
- Carers Australia. The Australian Government has published a Carer Information Kit, which provides information about the support and services that are available to carers and offers practical assistance. A copy of the Carer Information Kit is available by contacting the Carers Australia in each State and Territory or visit the Carers Australia website.
National Younger Onset Dementia Key Worker Program
The National Younger Onset Dementia Key Worker Program provides individualised information and support to improve the quality of life for people with younger onset dementia, their family and carers.
Dementia Australia coordinates or can put you in touch with, a large number of support groups throughout Australia some of which are specifically for carers of people with younger onset dementia.
Many people gain enormous comfort and practical assistance from attending support group meetings with others who know what it is like to care for, and live with, a younger person with dementia. Carer support groups bring together carers, relatives and friends of people with dementia on a regular basis under the guidance of a group facilitator, usually a health care professional or someone with first-hand experience of caring for a family member.
Living with Younger Onset Dementia is an educational and support group designed to involve both the person with younger onset dementia and their support person. This group allows participants to explore their feelings, meet with other people in similar circumstances, and learn strategies to maximise quality of life. More information about these groups is available from your local Dementia Australia office.
Dementia Australia provides a free specialist counselling service for carers and people with dementia which aims to support and assist people throughout the course of the disease.
More information on Counselling and Support Groups can be found in Services & Support.
The family doctor will probably be the health professional providing on-going health care for both the carer and the person with dementia. It is important that the carer and the doctor are able to understand each other and communicate, as this will be of great benefit to all concerned. Your doctor may be able to provide you with a Health Care Plan or Mental Health Care Plan which will assist with the cost of specialised services such as counselling, or physiotherapy. States and Territories may have their own specialised health services, talk to your GP about what these are and how you are able to access them.
The Aged Care Assessment Team (ACAT) may help people with younger onset dementia. The doctor can refer the person with dementia to the team, or they can be contacted directly.
There are a range of health services that are based on the assessed need of the person with dementia.
Help is available for people with incontinence and their carers from the Continence Foundation of Australia’s Helpline which can be contacted on 1800 330 066.
Carers need to have regular breaks from caring in order to manage the role long term. One way to do this is to arrange regular respite care for yourself or the person with dementia. There are various types of respite care available, including residential respite within a residential facility. Some agencies are able to provide more flexible respite which may be appropriate for people with younger onset dementia, such as respite within the home, or other facility. Respite is best arranged ahead of time, so that you can make all the necessary arrangements. It is also a good idea to consider, getting away and having a proper break or at least trying not to visit the person too much whilst on respite to ensure you have a proper rest.
Respite care can be arranged in the case of an emergency. Contact your local Carer Respite Centre on 1800 059 059.
There are other services available. that many provide respite. Commonwealth Government Departments such as the Department of Veterans’ Affairs, State Government Departments and Local Governments may all provide additional types of assistance.
Ask your doctor, or contact Dementia Australia for more information about assistance.
Home support services
It is important to know where these support services are and what they can offer. This helps with forward planning. If not needed immediately, they may be needed at some time in the future. There can be long wait lists for these services so it is important that you give them consideration early. These services have been designed to assist a person to stay in their own home for as long as possible.
Some of the most commonly used services for people with dementia living at home, and their carers are:
- Home help. This can provide assistance with house cleaning, showering and dressing. The person receiving the service will need to be assessed by ACAT who will decide how many hours, and what types of assistance is required.
- Meals-on-wheels provides home delivered meals
- The Independent Living Centre in each State and Territory offers a number of services designed to promote safe living. Advice is available on home modifications
"It helps to know you’re not alone…listening to how others deal with similar problems…it makes me feel much better to know that there are other people with a similar caring role."
Dementia Alliance International (DAI) offer peer-to-peer support programs to people with dementia so that they can access small groups of people with a diagnosis of a dementia. These groups, which include people from all over the world, meet regularly to discuss their experiences and problems but also their strategies for coping with the diagnosis and living more positively with dementia.