However, when you learn what dementia is, when you can understand how to step into a person with dementia's reality, when you can change your approach, then you can learn to walk alongside someone with dementia and see them as the person and not the label.
Dementia does not need to be scary or seen as 'the end', but it does need education, patience and understanding.
Supporting anyone affected by dementia is Dementia Waikato.
During May Stephanie Owen wants to raise awareness of the work this group undertakes by reaching out to people in her community of Te Awamutu and surrounds.
She is going to be in Robert Harris Te Awamutu every Monday morning to talk with anyone affected by dementia and to share information about Dementia Waikato.
Stephanie has been part of the Te Awamutu Dementia Support Group for some time and has experienced looking after people with dementia through her own extended family and friends.
She says the concept of the morning drop-in sessions is to provide a sounding board for anyone with any concerns or questions about living with dementia or supporting family and friends living with dementia.
"Sometimes people just need someone to talk to," she says.
"For others it is about gathering information so they can deal with the issues."
Stephenie says the Te Awamutu support group is for carers to learn from each other, support each other and know they are not alone.
It is a dedicated group attended by members of the community who have varied experiences of supporting family members and spouses who are living with a dementia diagnosis.
"Dementia Waikato offers a greater level of support for families, Dementia sufferers and carer, and that is what I am promoting," says Stephanie.
Dementia Waikato is a charity that provides free, ongoing education, advice, and strategies for anyone who has a confirmed diagnosis of dementia and is living at home, in the Waikato community.
Dementia adviser Tom Slater says they are a small team of three health professionals, a volunteer co-ordinator and a manager.
"Our team covers the Waikato DHB from Maramarua down to National Park, and Raglan across to Tokoroa, as well as the whole of the Coromandel," says Tom.
"Just under half of our funding comes from the DHB with the rest of the money made up from grants and generous donations from our community. All the money we raise in the Waikato stays in the Waikato."
As well as supporting people living with dementia on a one-to-one basis, the group provides family/whānau education, public talks, care agency education, socialising/activity groups, and care partner support groups.
"Dementia/mate wareware is becoming more prevalent in our communities as our populations live longer and the reduced stigma means more people are seeking a diagnosis," says Tom.
"However, we believe that Dementia Waikato is only aware of a relatively small proportion of the local population in and around Te Awamutu who are living with a diagnosis."
For this reason the group is supporting Stephanie, who is a volunteer and dementia advocate, and the "drop-in cafe every Monday from 10am until noon throughout May at Robert Harris Te Awamutu.
"If you would like some information on dementia or are starting your own dementia journey, then pop down and see what we are all about," says Tom.
