Helping people with dementia and Parkinson

People with chronic conditions should be in the centre of decision-making regarding their plans and goals for daily living, including basic activities (e.g. feeding, dressing, hygiene, and mobility), more advanced activities (e.g. personal finances, using transportation, telephoning, cooking, performing household chores, doing laundry, and shopping), and other meaningful activities that help promote health and mental well-being (e.g. social occupations, intellectual pursuits, recreational pastimes). However, there is limited involvement of these people and their informal carers (e.g. relatives or friends) in the design of technology linked self-care tools that could be used to support their personal plans for independent living at home.

These activities of daily living vary from person to person, which is why we want to develop a person-centred care planning system for which they have as much control as possible and to which others might input (e.g. carers). Information from digital devices will be fed into the person-centred care planning system to monitor how well the individual is managing their independence at home, which alerts others to prompt action when there are signs of things going wrong.

SCAMPI’s primary objective is to co-design and develop a new intelligent computer-based toolkit that will help and support people affected by dementia and/or Parkinson’s in their daily living. The SCAMPI toolkit will involve:

  • a simple user interface that will allow people with dementia and/or Parkinson’s and their informal carers to set up personal plans and goals for daily living activities and track the achievements of these plans
  • devices placed in the home (such as infrared motion sensors, contact switches, pressure sensors, etc.) that will help users and carers to monitor the achievement of their personal plans, coupled with simple data input when sensor data is infeasible
  • advice and recommendations based on the defined plans and tracked data
  • a sustainable business model, which will ensure that people with dementia and/or Parkinson’s can afford to use the toolkit, as well as enable future business investment to support and grow the toolkit.

Using a co-design approach, SCAMPI will support self-management decision-making, and empower participation in shared decision-making with relatives and carers. It will become an invaluable toolkit, which will help people remain healthy and independent in their homes for longer.