Frequently asked questions about the TIHM for dementia (TIM) study. The study looks at how technology can help improve the lives of people living with mild to moderate Alzheimer's Society.

By getting involved with TIHM for dementia you will be making a major contribution to the first UK study to look at how smart technology could support people with dementia who live at home. The study will also crucially assess how well the technology supports carers looking after someone with dementia.

Who can get involved in the study?

  • People who have been diagnosed with mild to moderate dementia and live in Surrey or NE Hampshire
  • People must be living at home with their spouse or have a regular carer (who could be a relative or friend) who is also keen to be involved in the study

Do paid carers qualify as a regular carer?

  • Yes, so long as you receive paid care from the same person for a minimum of 10 hours per week.

I've expressed my interest, what happens next?

  • You will receive an information sheet. This is a good time to discuss the study with close relatives and any relevant health professionals
  • If you decide to go ahead, a meeting will be arranged with you and your carer where you will be asked to sign a consent form. You will also be asked to do a simple memory test to confirm your eligibility for the study
  • After your eligibility has been confirmed, both you and the person who cares for you will be asked to complete a few simple questionnaires. These will ask you both about your health, your mood and your quality of life. The questionnaires will be repeated at the three and six month stages of the study
  • Shortly afterwards, you will be told which study group you are joining. TIHM for dementia is a Randomised Control Trial so participants will be randomly placed in either the group receiving the technology or the control group. The control group plays a vital role in providing us with a benchmark with which we can measure the effectiveness of the technology we are trialling.

What happens if I'm chosen to receive the technology?

  • A combination of small, technological devices, such as sensors and trackers, will be installed in your home. These devices, some of which can be worn, will communicate with each other and collect health related information about the person with dementia, 24 hours a day
  • This live information will be stored and analysed in a private and secure "Internet of Things" test bed cloud, held by the University of Surrey, and electronically sent to our monitoring service manned by clinicians
  • If the technology identifies a health or safety problem, an alert will be triggered that will be immediately assessed by our clinicians who will decide how to respond. They may, for example, call the carer, arrange for an Alzheimer's Society Dementia Navigator to visit or, if necessary, contact an emergency service.

Do I need to learn how to use all of the devices?

  • No, many of the devices will be in the background in your home. But there are a few that both you and your carer will need to be taught how to use. For example, there are devices that prompt you to check your weight or temperature, that remind you to take your medication and that ask how you are feeling.

Who will support me with the technology and be there for me if something goes wrong?

  • Our technical team will install the devices and show you how to use them. While the devices are being installed, either a clinician or an Alzheimer's Society Dementia Navigator will be present to offer support. The technical team will provide ongoing support throughout the study and you can contact them if you have nay problems
  • You can raise any concerns you have about the technology, or the study in general, with Dementia Navigators and trained volunteers who have been recruited specifically by the Alzheimer's Society to support people involved in the study.

What sort of information do the devices monitor?

The technologies monitor health related data such as:

  • Movement sensors can track someone's movements in the home
  • Other sensors placed on inanimate objects around the home, such as on beds, can monitor how restless someone is at night and if they are sweating
  • Sensors on kettles, fridges and toasters can detect if someone is following their normal patterns of behaviour for eating and drinking
  • GPS trackers placed on clothing or worn on the wrist can detect id someone has wandered from home
  • More interactive devices can ask a person to check their weight or hydration levels and also ask them about their general wellbeing.

Will the information be kept safe?

  • Our partner, Royal Holloway University of London, has put in place tight security controls to ensure patient privacy is not jeoparised and the information gathered from the technological devices is protected against eavesdropping or manipulation by third parties.

Watch Dr Payam Barnaghi, TIHM for dementia Technology Lead (University of Surrey), explain the security measures being taken to ensure the data collection system being used is secure and reliable.

Will I receive less face to face contact with health or social care staff?

  • No, both the group receiving the technology and the control group will receive the usual care.

How long will I be involved in the study?

  • You will be involved for six months. If you receive the technology, your involvement begins from the date the technology is installed. If you are part of the control group, you will be told when the monitoring starts.

Will I be able to withdraw from the study if I change your mind?

  • Yes, you are free to withdraw at any time without giving us a reason. If you chose to withdraw, this will not affect the care you receive.