In New Zealand, the focus of dementia care is on the carer. Carers do need support, and respite care provides crucial relief. Caring for someone who has dementia is one of the most difficult and tiring tasks in one’s life (hence the phrase "carers fatigue"). But what happens when there is no carer and the person with dementia is living alone?"

People living with dementia need their own government support budget

At the moment there is no government funding stream supporting this group of people. We saw this with one of the participants in the television programme "The restaurant that makes mistakes". A lady who was completely able to work in the kitchen under supervision lived in a rest home environment, where one of her biggest frustrations was that she was bored and was not able to do anything useful around the facility. It was a typical situation: too bad to stay at home alone but too good for a rest home. If she had been able to access funds that could support her staying longer at home and visiting an adult day activity centre, this would have made all the difference.

Let me introduce you to Donna[1]. Donna is a retired woman in her seventies who suffers from progressive cognitive decline/dementia and lives on her own at home. She has two sons, one who lives in New Zealand and the other in Europe. She can currently run her household but requires frequent support from her son.

Because of her cognitive decline, Donna forgets appointments and where she puts things. She is at the stage that she realises that she is forgetting, and so she frantically writes everything in her notebook in such a way that she is also unable to retrieve the information she put in it. Her finances are looked after by an agency that she visits several times per day as she forgets that she was there an hour earlier.

Three months ago, Donna came to Home4All (www.home4All.co.nz), and she spends two days per week with us. Home4All provides a safe environment for her where she does not need to be worried about what she might have forgotten. At Home4All she enjoys the company of others and can use her skills to help with the cooking and other activities around the home. This is what Donna enjoys and it gives her day meaning and fulfilment.

Unfortunately, Donna does not qualify for government support and has to pay out of her own pocket to come to Home4All. As a direct result, she has had to reduce her days coming to us from two to one day per week. As you can imagine, this again upsets her routine and puts her back into a situation full of uncertainty and social isolation.

People suffering from other neurodegenerative / life-limiting diseases are able to apply for financial support from the NZ government. This is not the case for people living with dementia / cognitive decline. We do not question whether people with cancer need support but we do for those living with dementia. Providing a variety of adult day activity programmes that enable those living with dementia to live meaningful and purposeful lives is important as it potentially reduces the slope of decline. In the UK, dementia is classified as a terminal illness[2] and therefore qualifies for the same level of care support as other life-limiting diseases receive.

Imagine if Donna could come three days per week to Home4All. We could monitor her level of decline and make sure there is appropriate care wrapped around her. We could make sure that her quality of life is as good as it can be before she dies a natural death or needs to be admitted into a care facility. Let’s not make people living with dementia wait to receive appropriate care. Give them their own care support budget to enable them to have a happy decline.

Notes

[1] To protect her identity, we changed her name.
[2] Social Care Institute for Excellence (https://www.scie.org.uk/)