Reducing carer fatigue in Sligo

The Background

In Ireland, dementia affects over 41,700 citizens aged over 30. Most of these (around 26,104) live at home and are supported by an informal carer, typically a family member.

Alzheimer’s disease is the most common form of dementia. It’s a terminal illness that develops slowly, causes memory, thinking and judgement impairment and may lead to changes in personality.

It is estimated that on average three people in every family provide some sort of informal care. Caring for a person with dementia can be challenging, carer fatigue is common and it can often result in the need for acute care (short-term treatment for a severe injury or episode of illness).

The Northern and Western Regional Assembly (NWRA) and the Centre for Design Innovation based at the Institute of Technology Sligo (ITS) aimed to address these issues by applying a service design process to the challenge of carer fatigue. Resulting in service solutions that enable those with dementia to live independently for longer.

The Process

The project began by establishing a steering committee with key members of the Health Service Executive (HSE), Alzheimer’s Society of Ireland (ASI), The Carer’s Association, DeExeter House (a private respite provider), GENIO (an independent funding body), Dolman (a private design company), a person with Dementia, the NWRA and ITS. This group provided information and guidance over the duration of the project. The project team led by ITS, conducted interviews with 23 informal carers and 16 healthcare professionals to map the experience of people with dementia and their carers, identifying particular issues.

The interviews focused on the causes of unnecessary acute care admission and issues in relation to providing care for someone with dementia. Findings indicated a possible link between illness, carer fatigue and lack of resources. For example, healthcare professionals had witnessed some cases of a person with dementia becoming ill, and therefore increasing the degree of care that they needed which caused significant carer fatigue. As a result the person with dementia could be admitted into acute care as there were insufficient resources to maintain the person with dementia at home.

This admission is very important as acute care can be a significant turning point for someone with dementia in maintaining their independence. After an acute care stay the person with dementia can often lose a number of their functions (i.e. ability to feed and dress themselves).

After the interviews the team organised a number of insight workshops with carers and stakeholders that considered the causes of carer fatigue. One of the most common insights was that carers had limited free time for themselves, particularly at the weekend. This was most evident in carers with young families as the time to spend with children at the weekend was limited. In the North West of Ireland care services and day centres that provide respite for the carer typically run from Monday to Thursday.

As a result of these workshops a pilot service for Saturday care was launched through a collaboration with the HSE, ASI, NWRA and ITS. It ran for 6 months with
10 participants from November 2014 to April. During these 6 months carers would record their experiences in ‘carers diaries’, providing details of their experience of the impact the pilot service on their level of fatigue. This was then further supported through bi-monthly interviews.

The service design methods provided an overview of the current services provided and identify unmet user needs. The workshops created a platform to collaborate between the wide range of key stakeholders in an informal and open format, and to establish the necessary requirements needed for the pilot project.

The Impact

Carers found they were able to spend time with family and friends on weekend and this reduced pressure that carers were experiencing.

Approaching the provision of Saturday day centres as an extension of the existing weekly day centre service can ensure a continuity of approach and help maintain the care routine for the person with dementia. This maintenance of routine can increase acceptance and compliance both within the care organisation and the home.

By using Dementia specific trained staff provided a suitable, adaptable care service for the emerging behaviours of people with Dementia, while providing appropriate mental stimulation. The provision of a Saturday Day Centre can provide carers with valuable time both for themselves and, more importantly, their families. Provisional financial review indicated that Saturday Day Centres are a sustainable solution.

 

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