Eurocarers
European association working for carers
Skype Support Group and Memory people
Summary
Skype Support Group is a group of carers facing with problems related to Alzheimer Disease and other memory disturbs that can speak and tell through Skype and also through Facebook by participating to the “Memory People” group: this is closed and everything posted is seen by members only.
Memory People™ was founded by Rick Phelps, who was diagnosed with Early Onset Alzheimer’s Disease at the age of 57. Rick created this group to bring real-time support to those touched by these diseases.
It is a virtual place where sharing thinking, fears, skills around the experience with diseases lost of memory related, but also where meeting people and exchanging information.
The service is much appreciated and it reached 2500 visitors through the Support Group in December 2013.
Although the lack of impact assessment, the service could positively affect the carers quality of life, because gives them the possibility of keeping in touch and sharing experience and enhances their self confidence. At macro level it can impact on the whole care system because creates a solidarity network that could minimise costs of hospitalization and optimise resources.
Description
refers to the target users, kind of service provided, ICTs typologies and devices used
The service aims at supporting carers of relatives affected by memory disorders and Alzheimer disease by creating a virtual place where exchange experiences and find peer support.
Main motivation that drove to develop the service was giving support to carers dealing with memory impairment family members, helping members sharing their journey with others, seeking comfort and understanding and receiving support. There are 10 additional Memory People groups currently, where to share prayers, videos, recipes, resources, etc.
Care Recipients
Informal carers
Paid assistants
Formal carers
Not available
Independent Living
Information and learning for carers
Personal Support and Social Integration for carer
Care coordination
The initiative provides support to carers and patients and gives them a chance for sharing experience and socialising.
Technological supports needed to be reached by the service are personal computers, tablets and smart-phones and internet connection.
Operational Information
refers to the type of funding, budget, sustainability and organisations involved
The service runs through the Internet (Skype and Facebook) so no funding was necessary.
The service runs through the Internet (Skype and Facebook) so no funding was necessary.
Not applicable
The initiative does not require any funding, as it is based on the willingness and need of people of participating to the discussion. It can sustain itself on the long term at the same quality level that it had at the starting moment depending on how many people will join the Skype support group.
Not applicable
Authorities
Private Care Sector
Health and Social Care Systems
Third Sector
Private Companies
None
Informal Carers
Health Professionals
Social Care Professionals
Privately-Hired Care Assistants (inc. Migrant Care Workers)
Volunteers
The service has not employed professionals because it is a self-help group.
In the service presentation there is a specific note:
“We at Memory People are in no way professionals in the area of Alzheimer's or support or counseling. Please contact your local doctor or neurologist if you are in need of any professional advice” .
Not applicable
2.500 users
The main promotion channel is the facebook page.
Evaluation
refers to the impact of the service on end-users, care organisations and authorities
The service could positively impact on the quality of life of:
- Informal carers and paid assistants, as it improves their social life and health.
- Elderly people: the service improves their health and social relationships.
Other benefits:
-acceptability of the ICT among users who can feel supported through the use of digital skills;
-care and support in a comfortable, safe and private environment.
Impressive the amount of received welcomes after only 20 minutes from joining the group.
Some examples telling the initiative is largely appreciated:
“Welcome to the MP family! We're so glad you”.
“Welcome & hello, we are all family here enjoy your visits :)”.
“ Welcome to our family. So glad you found us. You will find great support and information here”.
“Welcome to our family! We share everything on this journey we travel together I'm caregiver to my mom, moved in with her over 2 yrs ago”.
“ When you get a moment, please tell us what brings you here! Glad to have you with us! Welcome to our family!”.
(Skype Support Group, 2014)
Not available
Not available
Strengths:
- The service helps increase the awareness among carers around their role in the care system and in the whole society.
- The service provides prompt emotional support, information on services for carers and care recipient in a warm and loving welcome of participants.
- Another aspect of strength is the drivers moving the participants, that make the service more effective, as they are all experiencing memory disturbs somehow (as patients or carers), and know how handle them and which are the best words and actions for helping other persons facing the same problems.
- Participants’ privacy is protected somehow, as Memory People is a closed Facebook group and posted messages can be viewed by participants only.
Weaknesses:
- No professional or medical support involved: this is clearly stated in the Memory People Facebook page.
- The lack of impact assessment.
Opportunities:
- Involving volunteers as discussion animators and mediators in the forum.
Challenges:
- Adding links leading to professionals who can support users free of charge on a voluntary basis or through payment.
The initiative’s founder Rick Phelps has been able to develop the service on large as well and to transfer it in different contexts, because web-based technologies have no geographical boundaries, thus increasing its geographical coverage and addressing new target user groups were easy, thanks to the word of mouth among users satisfied by the initiativeAbout plans in the next future for increasing the initiative scalability and transferability Rick Phelps says: “The Skype Group Meetings have all been very successful. I will continue to do these to bring Awareness, "While I Still Can..."
More Information
includes contacts, publications and accompanying documents
References:
Skype Support Group (2014) available at http://www.facebook.com/groups/180666768616259/
Publications
http://www.alz.co.uk/icaniwill/library/family-carers-and-friends/care-for-caregiver/skype-support-group
Leeanne Chames
Executive Director, Memory People™ Personal Assistant to Rick Phelps, Contact through facebook group of Memory people.