A diagnosis of young-onset dementia can come at a distinct life stage for many people, while you may still be working, raising children, paying a mortgage, or developing a career. These pressures can make caring especially challenging. Planning now can feel overwhelming, but it provides a sense of control and helps protect the life you want to keep living.
What ‘living well’ can look like
Different people describe very different things that make life feel worthwhile. For some it’s keeping the garden tidy or cooking family meals, for others it’s working, travelling, parenting, studying, playing sports, hobbies or spending time with friends. Some activities you do together, some you do for yourself.
Living well is not about doing everything as before or doing things perfectly. It’s about maintaining purpose, connection, and choice. Planning can shift the focus away from loss or feelings of burden to contribution. With small adjustments, the person living with dementia can remain involved, valued, and purposeful.
For carers and families, quality of life also comes from shared moments; everyday routines, laughter, milestones, and making memories. Planning helps make space for these moments, even as circumstance change.
Why planning matters in young-onset dementia
Young-onset dementia raises practical pressures that are less common for people with dementia at older ages; conversations with employers, arranging childcare, managing mortgages or business finances, and thinking about how a diagnosis might affect study or career goals. Planning ahead can reduce crisis decisions later, for example, by arranging workplace adjustments early, organising who would care for young children or teenagers in an emergency, or putting legal and financial documents in place while capacity is clear. It gives you time to explore supports that may be available, such as income or disability payments, health or life insurance, and superannuation options.
Start with a simple life plan
A life plan helps you prioritise what matters over the following 12 months, and what steps you need to get there. It’s best done together with the person living with dementia wherever possible. Your life plan is flexible; revisit it as your needs change.
A basic life plan might include:
- What matters most this year (work, family, travel, hobbies)
- Practical steps to make it happen (who will help, what supports are needed)
- Immediate safety priorities (driving, getting lost or disoriented, medication)
- Legal and financial checks to arrange (wills, enduring power of attorney, insurance, banking, etc.)
- Who to tell at work and when (HR, manager) and what adjustments you might request
A life plan is not the same as a clinical care plan. It’s the practical, personal roadmap you and your family use to maintain meaning and autonomy. Health professionals can help with a care plan later, but the life plan keeps the focus on the life you want to lead.
Some people love planning; others find it hard. That’s OK. Even small steps – writing one priority, booking a GP appointment, or agreeing who will pick up the kids on Mondays – are progress. You don’t have to do everything at once.
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Explore the Life Plan Worksheet here when you are ready
Read the following section for more information on making a plan for this year
Photo: Jackie Best via Unsplash.
