Noticing changes and taking the first steps
For many family/whānau, the dementia journey begins with small concerns. You might notice memory lapses, confusion, changes in mood, or behaviour that feels out of character for your relative.
Not every change means dementia. However, new or worsening changes are worth checking, especially if they begin to affect daily life or safety.
Helpful first steps can include:
- Gently talking with your relative about what you have noticed
- Keeping a simple record of changes and when they occur
- Making an appointment with their GP to discuss concerns
A GP visit can help rule out other causes, such as infections, medication side effects, or vitamin deficiencies, as an underlying reason for the signs you’re noticing. Their GP will also be able to decide whether further assessment is needed.
If dementia is suspected, your relative may be referred for further assessment, such as a Mini-ACE test. These assessments are not something to “pass or fail”; they are a way to gain clarity, understand what support may help, and plan next steps.
Visit our page on understanding dementia for additional resources to help you through this process.
After a dementia diagnosis: what family/whānau can expect
A dementia diagnosis often brings mixed emotions. Some family/whānau feel shock or experience sadness, while others feel relief at finally having an explanation for what has been happening.
It is common not to remember everything discussed during the appointment. You can ask for written information or follow-up conversations to help process what the diagnosis means.
In simple terms:
- Dementia is progressive and affects people differently
- There are different types and stages of dementia
- The dementia journey looks different for everyone
Over time, family/whānau may notice:
- Changes in memory, thinking and communication
- Increasing need for help with daily tasks
- Changes in mood, behaviour or personality
Health professionals and your relative’s GP can help explain what support is available at each stage, from community services and home support to respite care and different levels of aged residential care.
Living with dementia at home: practical tips for family/whānau
Many people with dementia continue living at home for some time, supported by family/whānau. Small adjustments can make day to day life feel safer and calmer.
Helpful approaches can include:
- Routine: keeping days predictable with regular mealtimes, medication and familiar activities
- Environment: reducing clutter, ensuring good lighting and clear walkways, and making simple safety changes
- Communication: using short sentences, asking one question at a time, allowing extra time to respond, and focusing on feelings rather than correcting facts
- Meaningful activities: music, familiar household tasks, long-standing hobbies adapted to current abilities
As dementia progresses, it is normal for care needs to increase. Needing extra support does not mean any type of failure for family/whānau, it simply reflects changing needs.
Options such as home support or respite care can help family/whānau continue caring at home while reducing pressure and fatigue.
The emotional impact on family/whānau
Caring for a relative with dementia can bring emotional strain that builds over time. Even when family/whānau are providing the best care they can, it is common to feel tired, uncertain, or emotionally stretched as needs change.
Many family/whānau describe feeling:
- Sadness or grief as familiar aspects of their relative’s personality or abilities change
- Frustration or exhaustion as care becomes more demanding
- Guilt about needing breaks or considering additional support
These feelings are common and understandable. They do not reflect a lack of care, but the reality of supporting someone with a progressive condition.
When caregiving sits alongside work, parenting, or other responsibilities, family/whānau often put their own wellbeing last. Over time, this can increase carer stress and make everyday care harder to manage.
Support can help ease the load. Talking openly within your family/whānau, sharing concerns with trusted friends, or connecting with others who understand dementia can make a meaningful difference. Dementia NZ offers education and local support groups, while Carers NZ provides advice and connections to carer support services across New Zealand.
Looking after your own wellbeing is an important part of caring for your relative over the long term.
When care needs change: planning for more support
Over time, dementia usually leads to higher care needs. Support may be needed with personal care, mobility, safety and ongoing health needs.
This is often the stage when family/whānau begin discussing:
- Increased home support
- Respite care
- Moving into rest home care or dementia level care
When family/whānau feel they are reaching their limit, it can help to:
- Talk with the GP or specialist about current needs
- Ask about a needs assessment to understand available support
- Discuss options together as a family/whānau, including your relative, where possible
It’s important to understand that looking for more professional care is not equivalent to giving up. It’s an important step in ensuring safety, dignity and quality of life.
If your relative is already in, or moving into, a care home
For family/whānau with a relative already in, or moving into, a care home, staying involved remains important.
Family/whānau can support their relative by:
- Being part of care planning and regular reviews
- Sharing life history, preferences and cultural or spiritual needs with the care team
- Helping create familiarity through personal items, routines and visits
- Building open, respectful relationships with the care home team
It is normal to feel a mix of relief, sadness and guilt after a move into care. Many family/whānau find that professional dementia care improves safety, comfort and overall wellbeing for everyone involved.
Taking the next step
Dementia is a journey, and it is normal for support needs to change over time. Whether you are just starting to notice changes, supporting your relative at home, or beginning to explore care options, you do not have to figure it all out at once.
When you are ready, Bupa has information to help family/whānau understand dementia and plan next steps, including our Dementia care hub and guidance on dementia level care in New Zealand.
If you need a short term option while you consider what happens next, you can also explore short stay services (respite care), which some family/whānau utilise as a way to trial a care home environment or to create breathing space at home.