Tuesday, 28 August 2012

A day at the Dennis Centre

The Grouple team have all had experience of dementia from a personal, family point of view but it was time to find out what dementia is like for people we are not associated with. We were very lucky that our friends, Jewish Care allowed us to volunteer in one of their day centres.

Jewish Care provide care and support to the Jewish Community in London and the South East and provide a number of Special Day Care Centres as a service. The Dennis Centre offers a programme of stimulating activities for people who have memory impairment and/or a diagnosis of a type of dementia.

Members of the team volunteered for a day to spend time with people with dementia, gain empathy for the different ways people suffer with the illness and observe behaviours. Here is a summary of what we learnt:

  • Dementia can affect people of all ages in different ways.
    The people at the Dennis Centre were aged between 56 and 90 years old. Some had very little short term memory and therefore repeated themselves constantly and treated the centre as a safe place to spend a day.  Others were very concious that they had early stages of dementia and treated the centre as a place to spend time with others of a similiar level of dementia and to give their partner (the carer) a break.

  • Establishing a routine is essential.
    The day is organised with activities and break times. The members know they will arrive and have a cup of tea followed by a morning activity of their choice. Routine allows the members to relax and focus on the moment. Memory often returns when a routine is established.

  • Creating a ‘safe’, no-blame environment is comforting.
    In daily life dementia sufferers are often told that they have got things wrong, the centre however allows the members to relax and be themselves. There were a variety of activities to choose from such as yoga, haircare, manicures as well as word games and snooker. All were organised to stimulate minds, encourage participation and create relaxation.
  • Providing care away from the primary carer is beneficial to the carer and person with dementia.
    The members who were conscious that they had dementia were very aware that their partner needed a break from looking after them.

    ‘My poor wife has to deal with me 24/7 and all I do is talk, talk, talk. I have to keep talking or I forget what I’m going to say. Coming here gives my wife a break from me’
  • The members often act differently at the centre/with other people than at home.
    Members have been known to act very differently at the centre than at home because they have the ‘right to be themselves’. The care centre manager oftens finds herself listening to stories of the person with dementia being difficult to live with at home whereas she finds them happy and relaxed at the day centre.

Monday, 20 August 2012

Our journey to understand dementia

To make sure we understood the challenges faced by carers of people with dementia, we needed to carry out comprehensive desk research and speak to as many carers as possible. We wanted to understand what initiatives were already being carried out to help families live better with dementia and to determine which area we wanted to focus on. Here is an overview of some of the insights we picked up along the way:

The National Dementia Strategy: download it here
  • The National Dementia Strategy explains how dementia care is being provided.
    This document provides a holistic overview to dementia and the strategies put in place by the government to help people live better with the illness. It is being used as the main document for all care deliverers and charities to work towards.

  • On-going research is helping determine the causes of the illness.
    Charities, like the Alzehiemer’s Society for example, are continually researching dementia and how medication can help relieve the symptoms. They also support carers by providing advice, support and a place to share information online. 

    "Living with someone with dementia is like...being together, alone” primary carer

  • There are large number of care networks and dementia specific charities in the UK.
    There are numerous charities in the UK who support carers for people with dementia. They provide carers with information on how to care, provide support groups and support the carer in times of difficulty.

  • Being diganosed with dementia often happens late on in the illness.
    People can live with dementia for a number of years before realising or admitting they have signs of dementia. A stroke or depression are often the triggers to discovering that someone has dementia.

    "The timeline can also provide a good source of information on someone’s progress or degradation – what help / emotional support could it give the network of people as the person being cared for reaches the late stages of their illness?
    " Adam
  • Dementia affects people of all ages.It is a common belief that only ‘older’ people develop dementia and that they simply lose their memory. Dementia actually affects everyone and has been known to affect children. A person with dementia can have early signs for a number of years before requiring care.
  • There are existing online networks/tools aimed at helping families share care.
    There are online networks other than Grouple that help carers plan and share care. They have a level of complexity and are standard tools for a unique challenge.

    "A very valuable feature of the tool, especially for later stages, would be the ability to list and describe activities that the person with dementia enjoys doing with carers and visitors
    " Greg

Thursday, 16 August 2012

Grouple in the news

After the Design Council's Living Well with Dementia launch where all five winning projects were showcased, Grouple was mentioned in national press and trade press.

Here are links to what was said about the challenge, the projects and Grouple:

26 April 2012: click here to read the full article
26 April 2012: click here to read the full article
27 April 2012: click here to read the full article

27 April 2012: click here to read the full article