Respite and Dementia – Urgent Change Needed

Carer Support is not working and needs to be replaced as soon as possible with flexible budgets that people can use for what they, when need it. That is the main point from a report Respite in New Zealand: We Must Do Better, released in May by the Carers Alliance.

Some 430,000 people in this country are estimated to be providing up to $17 billion of unpaid care every year. It is the carers and the people they care for that should be the focus of a respite system that is flexible enough to respond to differing needs and contexts.

The way respite is funded by DHBs needs to be reviewed and an innovation fund created to make space for new ideas and service improvements. This should be linked to a quality and outcomes framework for service providers that can provide benchmarks for service improvement and innovation.

Respite is a chance for the carer and the person being cared for to take a break. It helps keep families together, keeps people out of hospital and delays the deterioration of people’s physical and mental wellbeing.

Dementia is a condition that is rapidly increasing among older people. Alliance Co-Chair and Alzheimers NZ CEO Catherine Hall commented that the “statistics are extremely worrying now, but with an aging population our need for carers will grow exponentially.” Respite services are vital to help carers as they support people living with dementia. Yet, as Sam’s story (see below) shows, there are many problems with the system.

Sam’s Story* – “I just need some help from time to time”

My wife was diagnosed with dementia 11 years ago at the age of 71. I care for her 24/7. Continuing to care for my wife is important. The lack of support services is making it more and more difficult.

I am over 80 and have health issues of my own. When you love someone, you care for them… but you can’t do it alone. There is no regular respite where I live. We were allocated 91 days of respite care by the nurse assessor – but there was no regular respite service in our area.

I can get the “carer support” reimbursement – but it is still the same amount it was 22 years ago and will only pay for two or three hours help at best.

My wife doesn’t need to go into a rest home – I just need some help from time to time

*Summarised from a story in the report based on real experiences of carers

Studies have shown that every dollar spent on respite gives at least $4 return, yet current funding levels are inadequate to meet the need. District Health Boards fund most respite services for older people. How those services are organised and funded varies between region and depends on the priorities of different DHBs for their regions. The result is that some areas lack good services, providers struggle for financial sustainability and there is a lack of innovation.

Start Here….

The report has a number of recommendations but the three first priorities are:

  1. All DHBs to review their services and recommission, with a priority on dementia.
  2. Develop a quality and outcomes framework.
  3. Establish a cross-sector stewardship and leadership group to help ensure policy coherence across government.

“None of this work needs to be complex”, says Ms Hall.  “It just needs to happen.”

Read the full report online on the Carers Alliance website