Working With Family Caregivers of Dementia Patients “I don’t remember exactly the day when I realized that my husband, Bob, was having major difficulties carrying on a meaningful conversation with me. As I think back, he must have been having problems for some time, but we coped and I covered up for him—at first unconsciously, then deliberately. ... Features
Free
Features  |   September 01, 2003
Working With Family Caregivers of Dementia Patients
Author Notes
  • Rosemary Lubinski, is professor in the department of communicative disorders and sciences at the University at Buffalo in New York. She specializes in the area of communication disorders of elders and working with family and professional caregivers in home and institutional settings. Contact her by e-mail at cdsrosie@acsu.buffalo.edu.
    Rosemary Lubinski, is professor in the department of communicative disorders and sciences at the University at Buffalo in New York. She specializes in the area of communication disorders of elders and working with family and professional caregivers in home and institutional settings. Contact her by e-mail at cdsrosie@acsu.buffalo.edu.×
Article Information
Special Populations / Older Adults & Aging / Features
Features   |   September 01, 2003
Working With Family Caregivers of Dementia Patients
The ASHA Leader, September 2003, Vol. 8, 25. doi:10.1044/leader.FTR4.08162003.25
The ASHA Leader, September 2003, Vol. 8, 25. doi:10.1044/leader.FTR4.08162003.25
“I don’t remember exactly the day when I realized that my husband, Bob, was having major difficulties carrying on a meaningful conversation with me. As I think back, he must have been having problems for some time, but we coped and I covered up for him—at first unconsciously, then deliberately. I was increasingly frustrated and angry with him for not being able to understand the simplest things. Half the time I didn’t know what he was talking about. Most of all, I felt really alone as Bob and I stopped having thoughtful conversations and our intimacy slipped away.”
As dementia begins to alter communication patterns, spouses, adult children, friends, and other caregivers become the “other” patients who are equally in need of intervention as the dementia patient. Early and continued counseling with family caregivers by the speech-language pathologist can help caregivers understand the nature of communication changes with the progression of dementia, how to facilitate communication as long as possible, and how to cope with the emotional toll of having reduced communication opportunities.
Effective intervention focuses on helping caregivers become active problem-solvers. The SLP also should remember that although caregivers want information about dementia, they also want an opportunity to discuss their feelings about the communication changes that are occurring and the increased burden they have for facilitating communication. But before any of this can occur, the SLP needs to gain access to the family caregivers.
Access to Caregivers
Most family caregivers do not automatically think of contacting an SLP for a communication evaluation of the patient with dementia or for information about communication difficulties. Other front-line professionals need to become aware of the expertise of the SLP so that referrals can be made. SLPs need to become more accessible to caregivers through referrals from family physicians and geriatricians, and also through programs offered by local Alzheimer’s associations, support groups, daycare programs, senior centers, and nursing homes.
Once access is achieved, the SLP can use a multi-pronged approach to provide information to caregivers about communication changes as dementia progresses and strategies for facilitating comprehension and expression, and to offer emotional support to help caregivers in the community cope with the communication changes that will occur with the progression of the disease.
Information Giving
Never underestimate the need family caregivers have for information about what is happening to their loved one or communication strategies. All too often, caregivers are given little specific information about the nature and progression of dementia and how it will affect communication and activities of daily living. Although caregivers want information, they do not want a didactic lecture that is more suitable for professionals. Instead, the SLP needs to balance the depth of information presented with opportunities for questions, comments, role-playing, and participant interaction.
Caregivers can be excellent sources of communication facilitation strategies and often provide sensitive peer support. Informative sessions allow time for repetition of information, live and video demonstration, and feedback from the caregivers. Giving oral or printed lists of “dos and don’ts” is far less important than helping the caregivers problem-solve the situations they encounter with the assistance of peers and the SLP.
Emotional Support
Family caregivers become better communication problem-solvers when they have the emotional strength to try new strategies. The SLP cannot avoid discussing the emotional impact of communication changes associated with dementia. Caregivers want to talk about the irritation, frustration, and helplessness they feel during communication with their family member. Caregivers need to realize that learning how to acknowledge and cope with their feelings is essential to communicating more effectively. Counseling and peer support may be a long-term process as the disease progresses.
In working with patients with dementia, the SLP should not forget about the “other” patients—the family caregivers. SLPs have unique and valuable expertise to offer the caregivers of those with dementia. Counseling should take a two-pronged approach of teaching communication strategies for facilitating interaction and supplying a venue where family members can express their feelings about the changes that are occurring.
Resources

ASHA Policies and Readings on Aging and Management of Dementia. Visit ASHA’s Web site at www.asha.org/members/slp/clinical/dementia/ for a compilation of ASHA’s policy documents, journal articles, special interest division newsletter articles, and Web resources.

Communicating With Alzheimer’s Patients: A Program for Caregivers. (1999). Two-hour audiotape and manual. Earn 0.2 ASHA CEUs through August 2005. Item #0112324. $74 member; $99 nonmember.

Ripich, D. (1996). Trainer’s Manual. Communicating with Persons with Alzheimer’s Disease: The FOCUSED Program for Caregivers. Austin, TX: Psychological Corporation.
Ripich, D. (1996). Trainer’s Manual. Communicating with Persons with Alzheimer’s Disease: The FOCUSED Program for Caregivers. Austin, TX: Psychological Corporation.×
0 Comments
Submit a Comment
Submit A Comment
Name
Comment Title
Comment


This feature is available to Subscribers Only
Sign In or Create an Account ×
FROM THIS ISSUE
September 2003
Volume 8, Issue 16