Dementia support and resources

Every person living with dementia has unique health and care needs. The support needed is likely to change over time.

Diagnosing dementia

There is no single test for dementia, and it can present differently for each person. A person may notice changes in their thinking, memory, mood or behaviour.

If you are concerned about yourself, or someone you know, start by speaking to a medical professional. Diagnosing dementia may take several conversations, a physical examination and some laboratory tests. Your General Practitioner (GP) may carry out these tests with you or refer you on to a Geriatrician, Neurologist or Psychogeriatrician.

You can learn more about the process of diagnosing dementia at healthdirect, Face Dementia and Dementia Australia (including dementia support for Aboriginal and Torres Strait Islander people and culturally and linguistically diverse communities).

After a dementia diagnosis, the person living with dementia and their carer or family may want to seek information and support on a variety of topics. Topics may include:

Increasing your understanding about dementia

There are a range of resources available online to support people recently diagnosed with dementia, their carers and families, including:

Dementia Australia

Dementia Australia offers a resource library on a variety of topics including general information about dementia, about younger onset dementia (for people under 65 years of age who are diagnosed with dementia), testing and diagnosis, treatment and management and more.
Dementia Australia also provides a range of support services including:

The National Dementia Helpline
Counselling
Peer Support Program
At Home with Dementia Service (advice on creating a dementia friendly home)
Education sessions and dementia-related events

Dementia Counselling and Support Service

Carers and families of people residing in Sydney Local health District who have been recently diagnosed with dementia by a District geriatrician can access support and information through this service.

Phone: 1300 722 276

Dementia Advisory Service

The Dementia Advisory Service provides information and support to help people living with dementia, and assists with linking you to other support services. This service is accessible to older people through a referral to My Aged Care.

Retreats for the person living with dementia and their carer

Several organisations offer Commonwealth funded retreats for people in the early stages of living with dementia and their carer. The retreats provide education and support on a range of topics. For more information visit Baptist Care Refresh Retreats and Group Homes Australia 5-day Rementia Together retreat.

Childhood Dementia

Although rare, some children may be born with a genetic condition that results in dementia. Visit the Childhood Dementia Initiative to learn more.

Planning for the future

A person recently diagnosed with dementia may want to consider planning across several aspects of their life. This may include:

Your ability to work
Driving and how dementia can impact
Finances and supports
Making a will
Maintaining physical and emotional wellbeing and tips for maintaining routine health checks
Future decision making such as appointing an Enduring Guardian and Enduring Power of Attorney
Advance Care Planning and directives

Visit Dementia Australia and Forward with Dementia for more information, including useful checklists to help you plan ahead.

Supports following a diagnosis of dementia

A person living with dementia, their carer and family may use both health and support services to assist them to live the life they want to live.

Supports at Home
My Aged Care My Aged Care is the entry point to access Australian Government funded aged care services (for people aged 65 years and over, and for Aboriginal and Torres Strait Islander people over 50 years of age). This first step is an assessment to determine your areas of need, which may include supports with daily activities such as showering, meals or home maintenance; carer respite; allied health and equipment and nursing or dementia advisory services. My Aged Care also offers helpful information about the Australian Government services available to those caring for someone living with dementia. Phone: 1800 200 422
CESPHN Care Finder Service The Care Finder Service is designed to help vulnerable older people navigate the aged care system and find support services. Phone: 1800 346 337
National Disability Insurance Scheme If you are under 65 years of age, or already a part of the National Disability Insurance Scheme, you may be eligible to apply for a support plan via the National Disability Insurance Scheme. Phone: 1800 800 110
Disability Gateway Information relating to National Disability Insurance Scheme providers in your area and services available. Phone: 1800 643 787
Carer Gateway The Carer Gateway provides helpful information and carer supports such as counselling, peer support groups, coaching and access to support services. Phone: 1800 422 737
Dementia Support Australia Dementia Support Australia offers support to carers, family members and healthcare professionals who are supporting a person living with dementia through behaviour changes with a range of services including: 24/7 Helpline Severe Behaviour Response Team Dementia Behaviour Management Advisory Service Phone: 1800 699 799 (24/7)
Carers Program A carer is someone who provides ongoing, unpaid care and support to someone who needs help because of a disability, mental illness, alcohol or drug dependency, chronic condition, terminal illness or who is frail due to age. Phone: 02 9767 5876 or slhd-carersprogram@health.nsw.gov.au
Carers NSW Carers NSW offers a range of services and supports for carers living in NSW. Phone: 02 9280 4744
Carer Groups and Dementia Cafés A group for male carers of people living with dementia who meet monthly on the first Friday of each month at 1.30pm. Phone: 02 9767 5953 or anne.tunks@health.nsw.gov.au Decafé at Adri's Cocina DeCafe Leichhardt Uniting’s DeCafé Dementia support group offers a safe space on the fourth Tuesday of each month between 10.30am-12pm. People living with dementia, their carers and friends, can meet up, chat with professionals and connect with each other. There is a gold coin donation for coffee and cake. Phone: 1800 486 484 Inner West Neighbour Aid - Living Well with Dementia Program A series of workshops for people living with dementia and their carers held at the 5 Senses Garden on the first and third Thursday of the month between 11am-1pm. Phone: 02 9799 5099
Dementia Occupational Therapy Service The Dementia Occupational Therapy Service is for people living with dementia in their own home, with a resident carer in Sydney Local Health District, who is experiencing behavioural and psychological symptoms of dementia that lead to concerns about safety at home or in the community. The person living with dementia must be known to a Concord or Canterbury Hospital Geriatrician. Phone: 1300 722 276
Flexible Respite Service The Flexible Respite Service provides support to help the carer of a person living with dementia to have a break. In this service, the person living with dementia is cared for individually and can remain at home with support whilst their carer goes out. Contact My Aged Care for an assessment to access this service. Phone: 1800 200 422
Social Support Groups and Day Centre Respite This service supports the carer of a person living with dementia to have a break. In this service, the person living with dementia would go out to a centre based service for the day. Contact My Aged Care for an assessment to access this service. Phone: 1800 200 422
Local Councils Local councils have information on local programs such as carer groups, exercise classes and special celebrations such as Dementia Action Week. Ashfield, Leichhardt, Marrickville Council - Inner West Council Burwood Council Canada Bay Council Canterbury Bankstown Council Strathfield Council Sydney City Council
Dementia Alliances There are two active Dementia Alliances in Sydney Local Health District. Connect with yours to find out what they are doing in your area. Inner West Dementia Alliance Canterbury-Bankstown Dementia Alliance

Supports at Home

My Aged Care

My Aged Care is the entry point to access Australian Government funded aged care services (for people aged 65 years and over, and for Aboriginal and Torres Strait Islander people over 50 years of age).

This first step is an assessment to determine your areas of need, which may include supports with daily activities such as showering, meals or home maintenance; carer respite; allied health and equipment and nursing or dementia advisory services.

My Aged Care also offers helpful information about the Australian Government services available to those caring for someone living with dementia.

Phone: 1800 200 422

CESPHN Care Finder Service

The Care Finder Service is designed to help vulnerable older people navigate the aged care system and find support services.

Phone: 1800 346 337

National Disability Insurance Scheme

If you are under 65 years of age, or already a part of the National Disability Insurance Scheme, you may be eligible to apply for a support plan via the National Disability Insurance Scheme.

Phone: 1800 800 110

Disability Gateway

Information relating to National Disability Insurance Scheme providers in your area and services available.

Phone: 1800 643 787

Carer Gateway

The Carer Gateway provides helpful information and carer supports such as counselling, peer support groups, coaching and access to support services.

Phone: 1800 422 737

Dementia Support Australia

Dementia Support Australia offers support to carers, family members and healthcare professionals who are supporting a person living with dementia through behaviour changes with a range of services including:

Phone: 1800 699 799 (24/7)

Carers Program

A carer is someone who provides ongoing, unpaid care and support to someone who needs help because of a disability, mental illness, alcohol or drug dependency, chronic condition, terminal illness or who is frail due to age.

Phone: 02 9767 5876 or slhd-carersprogram@health.nsw.gov.au

Carers NSW

Carers NSW offers a range of services and supports for carers living in NSW.

Phone: 02 9280 4744

Carer Groups and Dementia Cafés

A group for male carers of people living with dementia who meet monthly on the first Friday of each month at 1.30pm.
Phone: 02 9767 5953 or anne.tunks@health.nsw.gov.au

Decafé at Adri's Cocina DeCafe Leichhardt
Uniting’s DeCafé Dementia support group offers a safe space on the fourth Tuesday of each month between 10.30am-12pm. People living with dementia, their carers and friends, can meet up, chat with professionals and connect with each other. There is a gold coin donation for coffee and cake.
Phone: 1800 486 484

Inner West Neighbour Aid - Living Well with Dementia Program
A series of workshops for people living with dementia and their carers held at the 5 Senses Garden on the first and third Thursday of the month between 11am-1pm.
Phone: 02 9799 5099

Dementia Occupational Therapy Service

The Dementia Occupational Therapy Service is for people living with dementia in their own home, with a resident carer in Sydney Local Health District, who is experiencing behavioural and psychological symptoms of dementia that lead to concerns about safety at home or in the community. The person living with dementia must be known to a Concord or Canterbury Hospital Geriatrician.

Phone: 1300 722 276

Flexible Respite Service

The Flexible Respite Service provides support to help the carer of a person living with dementia to have a break. In this service, the person living with dementia is cared for individually and can remain at home with support whilst their carer goes out. Contact My Aged Care for an assessment to access this service.

Phone: 1800 200 422

Social Support Groups and Day Centre Respite

This service supports the carer of a person living with dementia to have a break. In this service, the person living with dementia would go out to a centre based service for the day. Contact My Aged Care for an assessment to access this service.

Phone: 1800 200 422

Local Councils

Local councils have information on local programs such as carer groups, exercise classes and special celebrations such as Dementia Action Week.

Dementia Alliances

There are two active Dementia Alliances in Sydney Local Health District. Connect with yours to find out what they are doing in your area.

Residential Care Supports
Cottage Respite Cottage Respite takes place in aged care accommodation or setting other than the home of the person/their carer. It is taken for a short period such as a weekend or a couple of days to give the carer a break from their caring role. Access to this service is through My Aged Care. Phone: 1800 200 422
Residential Aged Care Respite Residential respite takes place in an aged care facility for a few days to a few weeks at a time, with a total of 63 days per financial year available. It is best suited to people needing support for most daily tasks. Access to this service is through My Aged Care. Phone: 1800 200 422
Permanent Residential Aged Care An aged care home is for older people who can no longer live at home and need ongoing help with everyday tasks or health care. Access to this service is through My Aged Care. Phone: 1800 200 422
Aged Care Volunteer Visitors Scheme The Aged Care Volunteer Visitors Scheme is a program that recruits volunteers to visit older people in residential aged care or those in receipt of a Home Care Package. Phone: 02 9515 9800 (Monday to Friday during business hours)
Residential Aged Care Facility Outreach Service For specialist medical and nursing support and advice about clinical care for people living in Residential Aged Care. Phone: 1300 722 276
Yaralla House, Concord A 24-hour residential nursing facility for people with a diagnosed HIV cognitive impairment. Services include nursing care, social work support, occupational therapy and diversional therapy. Make a referral.

Residential Care Supports

Cottage Respite

Cottage Respite takes place in aged care accommodation or setting other than the home of the person/their carer. It is taken for a short period such as a weekend or a couple of days to give the carer a break from their caring role. Access to this service is through My Aged Care.

Phone: 1800 200 422

Residential Aged Care Respite

Residential respite takes place in an aged care facility for a few days to a few weeks at a time, with a total of 63 days per financial year available. It is best suited to people needing support for most daily tasks. Access to this service is through My Aged Care.

Phone: 1800 200 422

Permanent Residential Aged Care

An aged care home is for older people who can no longer live at home and need ongoing help with everyday tasks or health care. Access to this service is through My Aged Care.

Phone: 1800 200 422

Aged Care Volunteer Visitors Scheme

The Aged Care Volunteer Visitors Scheme is a program that recruits volunteers to visit older people in residential aged care or those in receipt of a Home Care Package.

Phone: 02 9515 9800 (Monday to Friday during business hours)

Residential Aged Care Facility Outreach Service

For specialist medical and nursing support and advice about clinical care for people living in Residential Aged Care.

Phone: 1300 722 276

Yaralla House, Concord

A 24-hour residential nursing facility for people with a diagnosed HIV cognitive impairment. Services include nursing care, social work support, occupational therapy and diversional therapy. Make a referral.

Palliative and End of Life Care
The following teams can offer additional support to the ongoing care the person living with dementia is receiving from their GP or specialist.
Community-Based Chronic Disease Palliative Care Team Multidisciplinary care for people with late stage chronic diseases including dementia. Phone: 1300 722 276
Out of Hospital Care – End of Life Packages Support with daily tasks is available if you are living with someone who is deteriorating or terminally ill. Phone: 1800 266 725 or complete our referral form
Palliative Care Nursing Service Sydney District Nursing delivers specialised palliative care nursing. An after-hours phone line is also available to these patients, carers and families to provide advice, support and reassurance. Phone: 1300 722 276
Bereavement Counselling Service Our Bereavement Counselling Service offers free, confidential support for people who are experiencing grief. Phone: 02 9767 5656

Palliative and End of Life Care

The following teams can offer additional support to the ongoing care the person living with dementia is receiving from their GP or specialist.

Community-Based Chronic Disease Palliative Care Team

Multidisciplinary care for people with late stage chronic diseases including dementia.

Phone: 1300 722 276

Out of Hospital Care – End of Life Packages

Support with daily tasks is available if you are living with someone who is deteriorating or terminally ill.

Phone: 1800 266 725 or complete our referral form

Palliative Care Nursing Service

Sydney District Nursing delivers specialised palliative care nursing. An after-hours phone line is also available to these patients, carers and families to provide advice, support and reassurance.

Phone: 1300 722 276

Bereavement Counselling Service

Our Bereavement Counselling Service offers free, confidential support for people who are experiencing grief.

Phone: 02 9767 5656