5.5 Types of services

There are services for people living with younger onset dementia and supporters

Navigating services for people with young-onset dementia can be complex. You may need to work with a range of government departments, services or employers. People who live in rural and remote areas may have fewer options. It is important to know that many services and even dementia-specific services are not age-appropriate for younger people with dementia or their carers. Systems do not always link well, and professionals may not fully understand what is available outside their local area.

To help make sense of what is available, services can be grouped into the following key types:

• Medical services
• Allied health services
• Home and community support services
• Dementia information, education, and support services
• Respite services
• Financial support for carers
• Employment, legal, and workplace support
• Support for children and young families

Medical services

Medical services include GPs, public and private specialists (such as neurologists, geriatricians, psychiatrists), hospital clinics and nursing services.

• They offer diagnosis, treatment, and referrals.
• Some hospitals offer young-onset cognitive clinics or younger person diagnostic pathways; however, hospital services may vary greatly by state or territory, and even within states services can vary by health district.
• Your GP is often the first point of contact and can link you to disability services or aged care services depending on age and eligibility.
• GP practice nurses often know local programs and supports.

Allied health services

Allied health professionals include psychologists, occupational therapists, physiotherapists, speech pathologists, social workers, dietitians, exercise physiologists, and podiatrists. They can provide:

• Reablement and rehabilitation
• Assessment and management of issues impacting daily life and independence
• Support for communication, mobility, home safety, and cognitive strategies
• Workplace assessments or recommendations if the person is still employed
• Support around driving, parenting, or managing complex family roles
• Planning for longer-term changes given the earlier age of symptom onset

You may be able to get subsidies for allied health services through your private health insurance or a GP Chronic Condition Management Plan for a limited number of sessions. The National Disability Insurance Scheme may also cover the cost of many of these services. A GP Mental Health Plan may provide subsidy for limited sessions with a psychologist. There are programs to assist with the cost of necessary home modifications when prescribed by an occupational therapist.

Home and community support services

These include help with cleaning, gardening, transport, meals, shopping, personal care, and nursing support. Some services also offer activity groups, respite, or home modifications.

Support can be:

• Government-subsidised, or
• Private, paid directly to the service provider

For people aged under 65, support is often accessed through the National Disability Insurance Scheme (NDIS). For people aged 65 and over, support is usually accessed through My Aged Care for the Commonwealth Home Support Program (CHSP), and the Support at Home program (formerly Home Care Packages). Some people with young-onset dementia may fall into both systems, depending on age and stage of progression of dementia. For details and more information on getting services go to the next article 5.6 Getting services – National Disability Insurance Scheme. For more information for those over 65, go to 5.6 Getting Services My Aged Care for carers here or for people living with dementia here.

Dementia information and support services

There are national and state organisations providing information, advocacy, counselling, education, and support. Key services include:

• Dementia Australia – Helpline (1800 100 500), post-diagnostic counselling, YOD-specific programs, support groups, education, general queries
• Carers Australia – Links to each state/territory carer organisation and carer-specific programs
• Alzheimer’s WA – State services, support, information
• Dementia Support Australia – A national 24/7 phone service (1800 699 799) providing help when changed behaviours are impacting wellbeing
• Culturally specific dementia programs, including Aboriginal and Torres Strait Islander services and multicultural services can be accessed via My Aged Care or local health networks.

Respite services for carers

Respite means taking a break from caring to maintain wellbeing. Options include in-home respite, community respite programs, day centres, and overnight or short-term residential respite. A recent Australian Government supported program combines a short respite stay for the person living with dementia and their primary carer, where both receive education and support.

The Carer Gateway is a phone and web service that can link you with respite options in your area (1800 422 737).

Financial support for carers

The Australian Government provides a number of options for financial support for carers, including a fortnightly carer payment, an additional fortnightly carer allowance to help support someone with high care needs, an annual carer supplement, and a one-off emergency assistance payment called the carer adjustment payment. Eligibility varies depending on income, assets, and residency. Carers Australia has more information and links to Services Australia for the various carer payments. Carers may also be eligible for other concessions, such as reduced energy bills, transport concessions and subsidies for motor vehicle registration.

Carers and the person living with dementia may also be eligible for state/territory Seniors Cards or Companion Cards (which provide a second ticket at events/activities for a companion at no cost).

Employment, workplace, and legal support

For people diagnosed while still working, or for carers balancing employment, these services can be important:

• Employee Assistance Program – this program is available through many workplaces, offering confidential counselling and support for employees and sometimes immediate family. Contact your workplaces Human Resources Department for more information.
• Job Access – is a national hub providing advice, workplace assessments, and information about disability employment support and workplace modifications for people with dementia who wish to remain employed
• Fair Work Ombudsman – provides information on workplace rights, leave entitlements, discrimination protections, and flexible work arrangements

Support for children and young families

Young-onset dementia often affects families where children or teenagers are still at home. Talking to teachers at school might be helpful. The following supports may help:

• Y Care of Dementia is a community for young people supporting loved ones with dementia.
• Young Carers Network is a nationally co-ordinated network to raise awareness of young carers, provide information, be a place to share experiences and link young carers to support networks.
• Kids Helpline (1800 55 1800) provides free, confidential phone and online counselling for children and young people
• Headspace is a national youth mental health foundation (12-25 years) offering counselling, online services, and family support
• Relationships Australia offers counselling, mediation, group programs, and education supporting individuals, families, and communities
• Carers Victoria offers resources and support for young carers.
• Little Dreamers Australia support young people aged 4 to 25 who provide or intend to provide care, support, or assistance for a family member.
• Non-parent carers of children of people living with dementia (e.g., grandparents, legal guardians) may be eligible for Childcare Subsidy and Family Tax Benefit. Go to the Services Australia page for more information.