Awareness of disease in dementia: Development of a multidimensional rating scale

Consciência da doença na demência: desenvolvimento de escala multidimensional de avaliação

Abstract

Objective:

To describe the development of the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), a multidimensional scale to evaluate awareness of disease in dementia.

Method:

The development of this scale was conducted in four steps. In step one, questions were drawn up after a review of the literature. The second step involved the suggestions offered by a neurologist regarding the skills considered important for the scale. The third step involved the re-writing and review of the domains and questions in the scale followed by a semantic evaluation performed by two independent psychiatrists. Step four consisted of the preliminary study aimed at evaluating the applicability of the ASPIDD.

Results:

In the semantic evaluation only minor changes were proposed. The preliminary sample had 52 patients, comprising 23 CDR 1 (male=9; female=14) and 29 CDR2 (male=13; female=16). Mean age of patients was 69.7±5.51 (CDR1) and 73.6±9.4 (CDR2), and age at onset was 66.4±5.7 years (CDR1) and 68.3±9.3 year (CDR2). Mean schooling was 9.0±4.3 years (CDR1) and 8.8±4.4 years (CDR2). Mean MMSE was 21.0±3.3 (CDR1) and 17.6±3.5 (CDR2). Mean Cornell was 4.8±2.3 (CDR1) and 4.2±1.9 (CDR2). The patient and caregiver dyads were aware of problems, mainly of those related to social, family and affective relations. The higher rates of discrepant responses were found on the awareness of cognitive deficits and changes in ADL.

Conclusion:

The ASPIDD is a multidimensional instrument to assess awareness of disease among AD patients.

Key words:
Alzheimers disease; awareness; dementia; caregiver.

Resumo

Objetivo:

Descrever o desenvolvimento da Escala de Avaliação do Impacto Psicossocial do Diagnóstico de Demência (AIPDD), uma escala multidimensional envolvendo a consciência de doença na demência.

Método:

O desenvolvimento dessa escala foi conduzido em quatro etapas. Na primeira etapa, as questões foram organizadas depois de uma revisão da literatura. A segunda etapa consistiu em sugestões oferecidas por um neurologista no que diz respeito às áreas consideradas como importantes para a escala. A terceira etapa envolveu a correção e revisão dos domínios e questões da escala seguida de uma avaliação semântica feita por dois psiquiatras independentes. O passo seguinte consistiu no estudo preliminar que objetivou avaliar a aplicabilidade da AIPDD.

Resultados:

Na avaliação semântica somente foram propostas pequenas mudanças. A amostra preliminar tinha 52 pacientes, sendo 23 com CDR1 (masculinos=9; femininos=14) e 29 CDR2 (masculinos=13; femininos=16). A média de idade dos pacientes foi 69.7±5.51(CDR1) e 73.6±9.4 (CDR2), e a idade de início foi 66.4±5.7 anos (CDR1) e 68.3±9.3 anos (CDR2). A média de anos de escolaridade foi 9.0±4.3 (CDR1) e 8.8±4.4 (CDR2). A média do MEEM foi 21.0±3.3 (CDR1) e 17.6±3.5 (CDR2). A média do Cornell foi 4.8±2.3 (CDR1) e 4.2±1.9 (CDR2). As díades de pacientes e cuidadores tinham consciência dos problemas, especialmente os ligados às relações sociais, familiares e afetivas. As taxas mais altas de respostas discrepantes foram encontradas na consciência dos déficits cognitivos e alterações nas AVD.

Conclusões:

A AIPDD é um instrumento para avaliar a consciência de doença em pacientes com DA.

Palavras-chave:
doença de Alzheimer; consciência; demência; cuidadores.

Texto completo disponível apenas em PDF.

Full text available only in PDF format.

References

• ¹
  Zannetti O, Vallotti B, Frisoni G, et al. Insight in dementia: when does it occur? Evidence for a nonlinear relationship between insight and cognitive status. J Gerontol Psychol Sciences 1999;54:100-106.
• ²
  Gil R, Arroyo-Anllo EM, Ingrand P et al. Self-consciousnessand Alzheimer's disease. Acta Neurol Scand 2001;104:296300.
• ³
  Dourado M, Laks J, Rocha M, et al. Consciência da doençana demência: resultados preliminares em pacientes com doença de Alzheimer leve e moderada. Arq Neuropsiquiatr 2005;63:114-118.
• ⁴
  Flashman L, McAllister T. Lack of awareness and its impact intraumatic brain injury. NeuroRehabilitation 2002;17:285-296.
• ⁵
  Flashman L. Disorders of awareness in neuropsychiatric syndromes: an update. Curr Psychiatry Rep 2002; 4:346-353.
• ⁶
  Clare L. Developing awareness about awareness in earlystage dementia. The role of psychosocial factor. Dementia 2002;1:295-312.
• ⁷
  Graham DP, Kunik ME, Doody R, et al. Self-reported awareness of performance in dementia. Cog Brain Res 2005;25: 144-152.
• ⁸
  Derouesné C, Thibault S, Lagha-Pierucci S, et al. Decreasedawareness of cognitive deficits in patients with mild dementia of the Alzheimer type. International. J Geriatr Psychiatry 1999;14:1019-1030.
• ⁹
  Dourado M, Laks J, Leibing A, et al. Conciência da doençana demência. Rev Psiquiatr Clín 2006;313-321.
• ¹⁰
  Bradshaw J, Saling M, Hopwood M, et al. Fluctuating cognition in dementia with Lewy bodies and Alzheimer's disease is qualitatively distinct. J Neurol Neurosurg Psychiatry 2004; 75:382-387.
• ¹¹
  Snow A, Norris M, Doody R, et al. Dementia Deficits Scale: Rating Self-Awareness of Deficits. Alzheimer Dis Assoc Disord 2004;18:22-31.
• ¹²
  Reed BR, Jagust WJ, Coulter L. Anosognosia in Alzheimer'sdisease: relationships to depression, cognitive function, and cerebral perfusion. J Clin Exp Neuropsychol 1993;15:231244.
• ¹³
  Duke LM, Seltzer B, Seltzer JE, et al. Cognitive componentsof deficit awareness in Alzheimer's disease. Neuropsychology 2002;16:359-369.
• ¹⁴
  Aalten P, Van Valen E, Vugt ME, et al. Awareness and behavioral problems in dementia patients: a prospective study. Int Psychogeriatr 2006;18:3-8.
• ¹⁵
  Marzanski M. On telling the truth to patients with dementia. Br Med J 2000;173:318-323.
• ¹⁶
  Folstein MF, Folstein SE, McHugh PR. Mini-mental state:apractical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189-198.
• ¹⁷
  Morris J. Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. Int Psychogeriatr 1997;9:177-178.
• ¹⁸
  Alexopoulos GS, Abrams RC, Young RC, et al. Use of theCornell scale in nondemented patients. J Am Geriatr Soc 1988;36:230-236.
• ¹⁹
  Rymer S, Salloway S, Norton L, et al. Impaired awareness,behavior disturbance, and caregiver burden in Alzheimer disease. Alzheimer Dis Assoc Disord 2002;16:248-253.

Publication Dates

• Publication in this collection
  Jan-Mar 2007