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HOMEeCare: Caring for the dementia caregiver and their loved one

HOMeCare Exercise and Mindfulness for Health Program

The complexities of dementia provide a challenge for both those living with the disease and the people caring for their loved ones at home. Even though most people want to live at home, the physical and cognitive burdens of the disease, combined with caregiver stress, increases the risk of institutionalisation.

Success has been achieved with programs offering support to the caregiver. Research also shows the benefits of exercise for people living with dementia. What is missing in clinical practice is an evidence-based, sustainable, cost-effective program that integrates these two separate approaches by simultaneously targeting the concerns of both the caregiver and the cared-for pair.

With the support of the Dementia Collaborative Research Centre (DCRC), the HOMeCARE study is the first trial in the world to combine a robust, targeted exercise program for older adults living at home with dementia with Mindfulness training for their caregiver. We aim to support the complex needs of both carer and cared-for pairs through improving exercise performance and stress reduction, delivered through an online based health coaching system. 

As it is a home based program, most of the program will be done at your own home (not including the 3 clinic visits).

We are currently recruiting for an estimated start date between July - September 2017. Final recruitment is estimated to be on August 2017. 

 

Human Ethics Committee approval number 2016/795.

 

Overall, the study will require a 26-week commitment. This will include clinic visits to the University of Sydney Lidcombe campus at the start of the study (week 1) to assess your health. Clinic visit will also be done at the end of Mindfulness Training (week 8), and at the end of the study (week 26). Clinic visits may take between 4 to 6 hours. Community transport can be arranged for these visits.


Study participants in the intervention group will receive an iPad containing all the training materials and exercise equipment. Prior to commencing, a home visit will also be done to teach the caregiver how to use the iPads, access materials, and direct the exercise programs for their loved ones. Once the HOMeCARE program begins, caregivers will receive an 8-week Mindfulness-based Stress Reduction Training program. 

This will be followed by a 16-week, home-based, robust strength and balance training program designed to improve functional mobility and psychological wellbeing in the person with dementia. Weekly 1 hour video conferencing with the program trainer will also be done to discuss the progress of the exercise, questions, and feedback on any difficulties experienced during the week. Once the study has been completed we will collect the iPads and exercise equipment, however participants will have full access to the HOMeCARE website including all the materials from the study.

 

 

By participating in this study, it is anticipated that the Mindfulness program may improve the mental wellbeing of the caregiver. We also anticipate that the exercise program may improve the functional independence of the person with dementia. As such reduction of overall caregiver burden is possible, but not guaranteed.

 

 

All information which is collected about you during the research will be kept strictly confidential. Any information about you which leaves the University of Sydney will have your name removed so that you cannot be identified. All information will be stored securely, and only the research team will have access to the information. It is anticipated that the results of this research project will be published and/or presented in a variety of forums. In any publication and/or presentation, information will be provided in such a way that you cannot be identified.

Any results specific to your assessment that may assist in improving the knowledge of your condition for the purposes of your healthcare treatment will be passed onto your GP or specialist and will be discussed with you and your caregiver if appropriate.

Mindfulness can be defined as the practice of awareness, through observing the present moment, without judgement. It includes the acknowledgement and acceptance of your feelings, thoughts, emotions, and physical sensations including pain. Potential benefits of mindfulness may include coping with everyday life or dealing with tough times, resulting in positive outcomes to both physical and mental health.

Mindfulness can be defined as the practice of awareness, through observing the present moment, without judgement. It includes the acknowledgement and acceptance of your feelings, thoughts, emotions, and physical sensations including pain. Potential benefits of mindfulness may include coping with everyday life or dealing with tough times, resulting in positive outcomes to both physical and mental health.
Mindfulness can be defined as the practice of awareness, through observing the present moment, without judgement. It includes the acknowledgement and acceptance of your feelings, thoughts, emotions, and physical sensations including pain. Potential benefits of mindfulness may include coping with everyday life or dealing with tough times, resulting in positive outcomes to both physical and mental health.

Eligibility

The population we would like to recruit for our trial are caregivers who are living with, and are the primary caregivers of people who have dementia. Both must be willing to partake in the full study period (26 weeks).

To be eligible for this study, you must meet the following criteria:

  1. The person that is cared for must have a diagnosis of dementia.
  2. The person with dementia is aged 65 or older.
  3. The person with dementia requires assistance with some daily activities at home, and has a carer (family member or friend) who provides most of this assistance.

Reasons why you may not be eligible for this study include: 

  1. You are unable to understand or speak English well enough to understand the Mindfulness or exercise program, 
  2. You have conditions affecting your vision, thus unable to see the videos and read the materials on the iPad.
  3. You have major unstable medical conditions limiting your ability to exercise, or assist the person you care for to exercise safely.

How to participate

If you are interested in assisting with this important and exciting area of research, please contact the study facilitator:

Kenneth Daniel