By Sarah Skinner 
Care Home Manager, Radius Hawthorne  

 

People often describe dementia as “the long goodbye”, and I think that rings true for a lot of families.  The grief while caring for someone with dementia builds slowly, and it changes shape over time. Because the person is still physically here, many families struggle to give themselves permission to actually call it grief. 

But it is grief. It can be grief for the personality that’s been lost, grief for the easy rhythm a relationship once had, and grief for a future that may now look very different from the one everyone had imagined.

Over the years, I have seen families carry all of that while also telling themselves they should be coping better, feeling less, or somehow managing it all more gracefully. That can be a very lonely place to be, and families carry so much guilt.

Am I visiting enough?
Am I doing enough?
Am I making the right call?

I hear these questions all the time, and my answer is still the same. There is no perfect way to do this. You can only do the best you can with the help, tools and understanding you have of the reality in front of you.

 

The relationship changes, but it doesn’t disappear

Families can spend so much energy trying to get back to the way things were that they miss what is still there, just in a different form. A person living with dementia may not respond in the way they once did, but that does not mean they are unreachable.
I have seen how strongly people still respond to warmth, rhythm, music, touch, familiarity and emotional tone. In fact, I often think your emotional state matters more than your words. Someone may not follow every sentence, but they can absolutely pick up on tension, calm, joy and reassurance.

That is why I do not think a good visit should be measured by whether someone remembered your name or followed every detail of a conversation. Sometimes a good visit is just sitting together without pressure, looking through old photos, listening to music, or talking about something familiar from many years ago. I have seen plenty of people lose speech and still remember music. Somewhere in the middle of all that change, the words to a familiar song can still come rushing back. For families, moments like that can feel like gold.

One of the biggest shifts I encourage in families is to stop waiting for the old response or reaction, because it may not come. There can be real relief in letting go of that old script and paying attention to what still works. When families stop trying to pull the relationship backwards, they often find there is still plenty of life in the present. It just speaks a different language.

 

There is still room for humour

Dementia can create moments that are confusing, unexpected and, yes, genuinely funny. A resident misreads a situation, or someone comes out with a completely left-field comment that catches everyone off guard. Families often freeze in those moments, unsure whether they are allowed to laugh.

Most of the time, I think laughter is exactly the right response. Not because dementia is funny, but because it is human to make mistakes. Life is still full of odd moments, even in the middle of hard things. A bit of humour can break the tension, bring everyone back into the room, and remind families that the familial warmth has not disappeared.

At Hawthorne, we also help prepare residents for family visits, especially when loved ones are visiting from overseas or after a long gap. Those small steps help build familiarity and gives everyone a better chance of connecting well.  This is something families can also do at home, especially in the earlier stages of dementia. Taking time before a visit to talk about who is coming, sharing photos, or revisiting memories can help reduce anxiety and make those moments together feel more natural and relaxed.

 

Get support early

If I could give families one practical piece of advice, it would be this: get help sooner. A good place to start is your GP, who can guide you through next steps and refer you for a Needs Assessment and Service Coordination (NASC). This helps determine what level of support you or your loved one may be eligible for, including home support, respite care, or longer-term care options.

Support can take many forms. It might be respite care, day programmes, planning ahead, or simply having someone to talk things through with. I also think it is important to recognise that the carer and the person living with dementia often need different kinds of support, and both need to be taken seriously. There are also excellent organisations across New Zealand that specialise in dementia support, like Dementia Canterbury and Alzheimer’s New Zealand.

Connecting with others also makes a real difference. Dementia-specific support groups give families a chance to share experiences, learn from others, and feel less alone in what can be a very challenging journey. I always encourage families to focus not only on what is changing, but also on what can still be strengthened and what can be done to prepare. That shift in mindset does not remove the hard parts, but it can make the road ahead feel less overwhelming and more manageable.

 

Sarah Skinner has spent more than 35 years working in aged care, beginning as a caregiver before becoming a registered nurse and later moving into management. As Care Home Manager at Radius Hawthorne, she is passionate about creating a warm, supportive environment where residents feel comfortable, valued and cared for. She has a particular interest in dementia care and believes strongly in helping families see the person beyond the diagnosis.