1. Caring, Knowing, and Doing: Caregiver, Research, and Interventions By Krystal Blanton Language, Health, and Aging With Dr Boyd Davis Spring 2006

2. Caring, Knowing, and Doing Caregivers: The most important component for “Active Aging” Medical Model & Research: How we are socialized and taught to think of dementia and people with dementia will inevitably affect how we behave in caregiving Interventions: What we do as caregivers affects the health of those we care for

3. Caregivers Caregivers include family members, nurses, doctors, social workers, friends. Our job is to look at the complete concept of health for those we care for. Marshall & Altpeter redefine ‘health’ as something more than not being ill. They state, “To reach a state of complete physical, mental, and social well-being, an individual or group must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment. Thus, health is, therefore, seen as a resource for everyday life, not the objective of living (136).”

4. Caregivers However, once diagnosed, people with Alzheimer’s judgments become suspect in regard to everyday living and their care is usually taken over by a professional caregiver. Caregivers, however benevolent their intentions, can actually pose a threat to maintaining the sense of self of people with dementia if they perpetuate erroneous stereotyping of aging and Alzheimer’s disease. Healthcare professionals have been noted to limit communications to task-oriented subjects, especially if they are in the late stages, mainly due to conceiving of people in terms of cognitive conditions. (Bertrand and Willis, 1999; Tappen, Williams, Fishman & Touhy, 1999 ).

5. Caregivers Although it is not uncommon for caregivers to describe persons with Alzheimer’s disease as different than they once were, current research shows that people with Alzheimer’s disease are aware of their identity and changes in themselves. These changes do not mean that people suddenly stop being a person. Changes in personality do not equate to loss of identity.

6. Medical Model “Ideas about a loss of self, and concepts such as a lack of awareness, have been concepts used to justify approaches to a care that undermine well-being and individuality, within the context of a scientific and research agenda that has focused on deficits and impairments shown by the person with dementia (Clare 2003, p. 2).” Education for caregivers in professional fields has therefore been especially influenced. The medical model gives professionals justifications for only seeing the person as their deficits, without any social dimensions (Marshall & Altpeter). Medical discourse has socialized the public to the results of objective testing, in isolation from real-life factors. Dementia has therefore become the “dismantling of the self” (Davis 2004, p. 375).

7. Research Measuring identity with standard objective tests of cognitive abilities isolates the person from the social situation that make interactive behaviors pertinent. These tests are not done in settings or circumstances that would qualify as typical for people to have regular interactions. Such testing cannot display the full personalities, with in-tact abilities that are required of participants in social interactions. (Sabat 2001)

8. Research Research based on natural conversations, and conversation where intervention techniques are being implemented, give more accurate measure of abilities than standardized testing alone. They also have functional applications by less evasive means. Using discourse analysis and comprehensive, longitudinal research, we can develop training with interventions so that interactions can support better mental, physical, and social well-being. (Marshall & Altpeter 2005, Arkin & Mahendra 2001 )

9. Research & Caregivers working together “Those interested in aging and health promotion need to establish that there is a relationship between specific social and lifestyle situations and morbidity and mortality…Specific interventions need to be established to produce social and lifestyle situations that, in the first proposition, have been argued to reduce morbidity and mortality (Marshall & Altpeter 141).” This also implies interventions must also reduce communication barriers to promote a better quality of care, where interactions enhance the lives of people with Alzheimer’s disease.

10. Intervention Using a variety of conversational techniques can improve comprehension and participation by co- constructing conversations go-ahead signals: like “uh-huh” Indirect questions: make a statement sound like a question by tone of voice Simpler sentence structures Repetition and paraphrasing, such as the repeating the last phrase, which can stimulate semantic memory (Davis)

11. Intervention techniques Both validation and reminiscence enhance communication and well-being by acknowledging the sense of self of persons with Alzheimer’s, affirming their identity and reality. These techniques use a variety of memory aids and validate communication to support personal awareness that remains present throughout one’s life. (Murna Downs 1997)

12. Intervention techniques Validation therapy is an approach to communicating with and understanding the person with dementia by affirming her or his sense of reality. If you correct or contradict a person’s view of reality, the results is most often counter-productive and the person tends to turn attention inward, not toward further communicate To validate someone’s reality assumes that the individual's behavior and speech has an underlying meaning and purpose. (Feil 1982)

13. Intervention techniques Reminiscence Reminiscence therapies entail recollecting the past, often through storytelling, by using a variety of aids to prompt autobiographical memories and affirm the sense of self (Gibson 1994). By remembering and associating oneself with past times, people connect with themselves and are better able to deal with situations that are negative at the present or where they no longer have the same personal control. Recalling the past and communicating it to others also keeps the mind active by not only being a topic of interest but also because it validates who the person still is by how they got there. (Nussbaum, Pecchioni, Robinson, Thompson)

14. Intervention techniques Quilting Quilting uses reminiscence techniques to co-construct a story about the person with Alzheimer’s disease past Either the person with Alzheimer’s disease starts it or the caregiver can initiate it by referencing a part of a previous conversation that indicated there was a “small story” within it or they can use items that display events that the other participant is wearing or is in their room. Participant with Alzheimer’s disease elaborates The other participant repeats part or all of what was said Participant with Alzheimer’s disease gives more detail (Davis & Moore 2002)

15. Intervention techniques Various Memory cueing Uses words and/or visuals to cue memories, like videotapes of family events or color code things in the order they should be done. Memory wallets Uses pictures and brief statements about familiar people, places, and events Scripts and structured questions Used to guide reading group activities Music Uses music to enhance mood and attention (Arkin & Mahendra 2001)

16. What interventions mean Person-Centered Care What this means is person-centered care; communications that take the person, their needs, personalities, and abilities, into account by developing interpersonal relationships between people with dementia and caregivers. Includes empathetic and sensitive social interactions taking into account the physical, social, and emotional needs, personalities, and abilities of those involved (Kitwood 1997)

17. Acknowledgements I would like to show my appreciation to the members of my group for their hard work and all their contributions. Thank you. Special thanks are due to the wonderful Dr Davis for all the time they have contributed toward helping me in this class and in all my work at UNCC.

18. References Arkin, S. & Mahendra, N. (2001). “Discourse Analysis of Alzheimer’s Patients Before and After Intervention: Methodology and Outcomes.” Aphasiology, 15 (6): 533-569. Bertrand, R. M., & Willis S. L. (1999). “Everyday Problem Solving in Alzheimer’sPatients: A Comparison of Subjective and Objective Assessments.” Aging & Mental Health, 3 (4): 281-293. Clare, L. (2003, Nov 24). “Discussion: The Predicament of Self in Dementia.” Self and Dementia: Symposium Organized by Habib Chaudhury. GSA Discussion, San Diego. Davis, B. (2005). Alzheimer Talk, Text and Context: Enhancing Communication.Palgrave-Macmillan. Davis, D. H. J. (2004). “Dementia: Sociological and Philosophical Constructions.” Social Science & Medicine, 58: 369-378. Dijkstra, K., M. Bourgeois, R.S. Allen, & L.D. Burgio (2003). “Conversational Coherence: Discourse Analysis of Older Adults with and without Dementia.”Journal of Neurolinguisics. Article in Press. Downs, M. (1997). “Progress Report: The Emergence of the Person in Dementia Research.” Ageing and Society, 17: 597-607. Green, N and B. Davis. “Dialogue Generation in an Assistive Conversation SkillsTraining System for Caregivers of Persons with Alzheimer's Disease." AAAI Spring Symposium Series: Natural Language Generation in Spoken and WrittenDialogue. 2003. Hubbard, G., Cook, A., Tester, S., & Downs, M. (2002). “Beyond Words: Older People with Dementia Using and Interpreting Nonverbal Behavior.” Journal of Aging Studies, 16: 155-167. Kempler, D., Almor, A., MacDonald, M., & Andersen, E. (1999). “Working with limited memory: Sentence comprehension in Alzheimer’s disease.” Constraints onLanguage: Aging, Grammar, and Memory. Boston, MA: Kluwer Publishers. Kitwood, T. (1997) Dementia Reconsidered. Buckingham, Open University Press. Marshall, V.W. & Altpeter, M. (2005). “Cultivating Social Work Leadership in Health Promotion and Aging: Strategies for Active Aging Interventions.” Health &Social Work, 30 (2): 135-144. Moore, L.A. & Davis, B. (2002). “Quilting Narrative: Using Repetition Techniques to Help Elderly Communicators” Geriatric Nursing. 23 (5): 262-266. Nussbaum, Pecchioni, Robinson, Thompson. (2000). Communication and Aging. NJ: Lawrence Erlbaum Associates, Inc. Tappen, R. M., Williams, S. F., Fishman, S., & Touhy, T. (1999, Summer). “Persistence of Self in Advanced Alzheimer’s Disease.” Journal of Nursing Scholarship, 31:121-125. Sabat, S.R. (2001). The Experience of Alzheimer’s Disease: Life through a Tangled Veil. Malden, Massachusetts: Blackwell.