Cultivating a Supportive Aphasia Community
October 29, 2015
By Eileen Hunsaker, MS CCC-SLP, CBIS
Aphasia Center at MGH Institute of Health Professions, Boston, MA
It is Friday afternoon at 1 pm and the lobby is packed as chattering people eat lunch and socialize. Through the noise, phrases such as “I have aphasia”, or “Just take your time”, as well as sounds from iPads can be heard. This is a typical scene before the start of the weekly Aphasia Conversation Group at the MGH Institute of Health Professions (MGH-IHP) in Boston, which provides speech and language groups and services for individuals with aphasia and their families/caregivers. At this time, this group consists of approximately 70 members, 30 of whom regularly attend the weekly Conversation Group.
Established in 2001, with only 3-4 clients as a clinical practicum site for graduate students within MGH-IHP, The Aphasia Center, has steadily increased in clientele and programming to help meet the needs of the aphasia community. We continue to strive support and follow the Life Participation Approach to Aphasia (LPAA) as we assist our clients in the “re-engagement of life by strengthening daily participation in activities of choice”(1) and in establishing and maintaining social links within a highly supportive environment. Through the years, and with input from our clients with aphasia and their family/caregivers, we have learned much about establishing a supportive aphasia community.
Eight Action Steps in Starting and Growing an Aphasia Group
- Start small, but just start! The power of a few active, committed clients can be all that is needed to start establishing an aphasia community. Meet in a central location in a building that is easy to access and where there is ample handicap parking. Use Skype during the group to connect with members from rural areas. If possible, do not charge a fee for group attendance.
- Advertise. Enlist the help of enthusiastic clients and caregivers/family members. Have them help with “word of mouth” advertising. Set up a blog, website, Facebook page, Twitter account promoting your group.
- Network with your SLP, OT and PT friends and colleagues. For client referrals, contact professionals (neurologists, physiatrists, neuropsychologists etc.) within your area. Coordinate with other Stroke/Aphasia support groups that might be in the area. Work with them cooperatively, rather than competitively.
- Plan and provide educational and social functions for clients and caregivers including possible group community outings. Through there groups, help clients accept and adjust to the idea that aphasia may be chronic. Invite speakers to address this topic and others as needed. Social lunches, art groups, outings to ball games and music groups have been of few of our client’s favorite group activities.
- Introduce a new group member to other members who may have a similar background. For example, if there is a new group member who has young children, introduce him/her to another member who also has children living at home. This form of “mentoring” has proven to be very effective in keeping new members engaged in group activities.
- Though the group should primarily focus on people with aphasia, welcome others who may have other underlying or different communication/cognitive disorders such as dysarthria, apraxia of speech, and cognitive linguistic disorders, or a combination of these disorders. Recognize that aphasia results not only from CVAs but from brain tumors, TBIs, and PPA as well as other dementias.
- Provide a means for clients to give back to the community (help with community fundraising and awareness about aphasia, educating graduate students etc). For example, we have had group members who have helped educate first responders (EMS) about aphasia. This can be empowering to people with aphasia and is more effective in educating the public about aphasia.
- Allow the community time to grow! Cultivating an effective group may take months and years. Allow the clients input as to how they would like the group to grow and evolve and adjust the group as needed.
Below are some suggestions for integrating caregivers/family members into the aphasia community.
What can I do to support caregivers and family members:
Establish a family member/caregiver group that meets simultaneously to the group for people with aphasia. Hold each group in a separate room.
Get caregivers talking to each other!! They are each other’s best support!
Initially, introduce them to each other (in the client waiting room, on outings) then, when appropriate, provide them with a group of their own (without individuals with aphasia).
Get them involved in planning outings, community fundraisers, aphasia/stroke advocacy programs. Give them “assignments” to complete to help with outings.
Invite other healthcare professionals to attend caregiver group sessions (personal care attendant, case manager, healthcare proxy).
In summary, it is possible to develop, cultivate, and maintain and effective aphasia community for both individuals with aphasia and for families, caregivers and service providers through providing a variety of services and programs that address individual communication and psychosocial needs.
- LPAA Project Group (2000). Life participation approach to aphasia: A statement of values for the future. ASHA Leader, 5(3). 4-6.
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