Our Programs
Our programs, services and supports help create a brighter future for people with Down syndrome.
As individuals with Down syndrome continue to live longer and healthier lives, understanding the unique aspects of ageing becomes increasingly important for families, caregivers, and individuals themselves.
People with Down syndrome experience ageing differently than the general population. While advances in healthcare have significantly improved life expectancy, individuals with Down syndrome may face specific challenges related to:
-
Health Conditions: Such as early-onset Alzheimer's disease, dementia, sensory impairments, and musculoskeletal issues.
-
Social and Emotional Well-being: Changes in social networks, transitioning from parental care to independent living or alternative care arrangements.
-
Financial and Legal Considerations: Including guardianship, financial planning, and accessing appropriate supports and services.
At Down Syndrome NSW, we are dedicated to providing the support and resources needed to ensure a fulfilling and healthy life for older adults with Down syndrome.
Estate Planning for Parents of a Child with Disability
Planning for the Future: Estate Planning and Financial Security
Planning for the future of a family member with disability can feel overwhelming, but having the right information can help you make informed decisions with greater confidence.
Down Syndrome NSW has brought together a collection of resources, webinars, guides and practical information from a range of trusted organisations and experienced professionals to support families as they navigate estate planning, wills, trusts, financial arrangements and future decision-making. These resources have been selected to help families better understand the options available and start important conversations about long-term planning.
Through these resources, you can learn more about:
- How estate planning works in Australia
- Key considerations when planning for the future of a person with disability
- Lifetime and future wealth transfer planning
- Wills, trusts and other financial arrangements
- Special Disability Trusts and beneficiary options
- Protecting government supports while providing financial security
- Planning for ageing carers and family members
We know that future planning is an important topic for many families in our community. Whether you are just beginning your planning journey or reviewing existing arrangements, we encourage you to explore the information available and consider which options may be appropriate for your family's circumstances.
Important disclaimer: The information provided on this page is intended as general information only and should not be considered legal, financial or taxation advice. Down Syndrome NSW is not a legal service provider, and every family's circumstances are different. Before making decisions about wills, estate planning, trusts or financial arrangements, we strongly recommend seeking advice from a qualified legal professional and, where appropriate, a financial adviser.
By planning ahead and accessing expert advice, families can help build greater security, choice and peace of mind for the future.
Featured resources include:
- Estate Planning for a Family Member with Disability
- Wills and Estate Planning webinars
- Special Disability Trust information and presentations
- Ageing Well Initiative resources
- Planning for the Future guides and practical tools
The resources on this page have been developed by a variety of trusted organisations and subject matter experts and are provided to assist families in understanding available options and considerations.
Ageing and Dementia
Information and Education
RESOURCES FROM AUSTRALIA
DSA & DA Guide to Dementia
Down Syndome Australia and Dementia Australia booklet to help understand the links between health and lifestyle so that you can take action to reduce the risk of dementia, recognise the signs of dementia, and do what you can to support a person with Down syndrome if they do develop dementia.
An easy to understand guide to dementia and Down syndrome.
Dementia Easy Read
An Easy Read guide about dementia, from Down Syndrome Australia
Dementia Australia Guide to Down syndrome and Alzheimers
Check out the general resorces and information from Dementia Australia.
RESOURCES FROM THE UK
Keeping people who have Down syndrome well before and during dementia.
Workbook for families and Staff by Dr Karen Dodd 2025
The Down Syndome Medical Interest Group UK (DSMIG)
Resources from a network of approximately 160 healthcare professionals from the UK, Republic of Ireland and further afield.
Down Syndrome and Alzheimer’s Disease 2018
Down’s Syndrome Association UK information book
National Task Group on Intellectual Disabilities and Dementia Practices (Known as NTG)
Resources for families and Professionals
TOOLS
NTG-EDSD Assessment tool for families 2024
National Task Group on Intellectual Disabilities and Dementia practice Tool which is Early Detection Screening for Dementia
Quick Guide for using the NTG-EDSD by Families
Adaptive Behaviour in Dementia Questionnaire
A 15 question survey for caregivers to inform health professionals. Question are based on items of the Adaptive Behaviour Scale shown to decline in Down syndrome Alzheimer’s disease.
(ABDQ; Prasher, Asim, & Holder, 2004)
Dementia Screening Questionnaire for Individuals with Intellectual Disabilities
53-item checklist of ‘best’ function, areas of decline, and overall observations to help carers record functioning and assist health professionals to screen for dementia.
Dementia Questionnaire for People with Intellectual Disability
50-item questionnaire to assess daily living skills and identify social & cognitive declines for early detection of dementia.
External Resources
Tool Kit: Talking End of Life with People with Disability
Unisson Research Project: Dying to Talk
Dementia Australia
National Down Syndrome Society: Ageing and Down Syndrome
Volunteer
Read more about how you can make a difference as a volunteer at Down Syndrome NSW.
Become a Member
Actively contribute to our mission of creating a more inclusive and accepting society for individuals with Down syndrome.
Stay Updated
Follow us on social media for the latest news!
