Estudio Palidem: cuidados al final de la vida en pacientes con demencia avanzada institucionalizados / The Palidem study: care at the end of life in institutionalized patients with advanced dementia

OBJETIVO: Desarrollar un plan de atención específi co en pacientes con demencia avanzada institucionalizados, planificando los cuidados mediante el control sintomático, tomando decisiones con el cuidador principal, realizando un apoyo psicológico y espiritual. MÉTODO: Estudio descriptivo de periodo en el Centro Txara 1, desde el 1 de julio de 2014 hasta el 31 de diciembre de 2016, identifi cando a aquellos residentes con demencia avanzada y síndrome de declive. Se recoge trimestralmente el grado de control de síntomas (Symptom Management at the End-of-Life in Dementia) (SM-EOLD), utilizando la escala PAINAD para la valoración del dolor; el confort en el momento de la agonía se determina diariamente (The Comfort Assessment in Dying with Dementia) (CAD-EOLD), estableciendo con el cuidador principal la toma de decisiones basadas en los objetivos asistenciales paliativos. Tras el fallecimiento se realiza una encuesta de satisfacción al cuidador (Satisfaction with Care at the End-of-Life in Dementia) (SWC-EOLD) y contacto periódico con la pastoral para el apoyo espiritual. RESULTADOS: Se han analizado 74 residentes, con una edad media de 87 años, un 79 % mujeres, con 4,6 medicamentos de media, con enfermedad de Alzheimer como principal causa de demencia. En el control de síntomas en fase estable no se detecta inestabilidad física o conductual relevante, detectándose en un 5 % la presencia de dolor. De 50 residentes fallecidos, el 94 % sucede en el propio centro, en un 67 % se puede registrar el grado de confort destacando la presencia de disnea y disfagia, al ser la infección respiratoria aspirativa la principal causa de fallecimiento. En un 66 % de la población seleccionada se realiza atención espiritual. Un 30 % de los cuidadores principales responden a la encuesta de satisfacción, con un alto porcentaje de aceptación en el nivel de cuidados. CONCLUSIONES: La identificación de los pacientes con demencia avanzada en situación de final de vida permite estructurar un plan de atención en el centro gerontológico, conociendo las necesidades sintomáticas, el grado de confort o bienestar y consensuando las decisiones en cuanto a la proporcionalidad de cuidados con la familia. Ante situaciones de descompensación aguda, la coordinación con los recursos sociosanitarios disponibles es fundamental para poder llevar a cabo las decisiones adoptadas del equipo sanitario con el cuidador principal

OBJECTIVE: To develop a specific care plan for institutionalized patients with advanced dementia based on symptom control and including joint decision making with the primary caregiver as well as psychological and spiritual support. METHOD: A descriptive 1-period study at Centro Txara 1, from July 1 2014 to December 31 2016, which identified residents with advanced dementia and geriatric failure-to-thrive syndrome. Symtom control extent was quarterly assessed using the Symptom Management at the End-of-Life in Dementia (SM-EOLD) scale, and the PAINAD scale for pain; comfort at the end of life was assessed daily with the Comfort Assessment in Dying with Dementia (CAD-EOLD) instrument, and decisions were made jointly with the primary caregiver based on the goals of palliative care. After the death of the patient a satisfaction survey was administered to the caregiver (Satisfaction with Care at the End-of-Life in Dementia, SWC-EOLD), who was also provided with regular contact with the pastoral care team for spiritual support. RESULTS: A total of 74 residents were assessed with a mean age of 87 years; 79% were females, mean number of drugs was 4.6, and Alzheimer's disease was the primary cause of dementia. Stable-phase symptom control identified no relevant phisical or behavioral instability, but pain was found in 5% of the sample. Of 50 residents who passed away, 94% died in the hospice; in 67% comfort degree could be collected, and the presence of shortness of breath and dysphagia stood out, as aspiration-induced respiratory infection was the primary cause of death. Spiritual care was provided for 66% of the study population. In all, 30% of primary caregivers responded to the satisfaction survey showing a high percentage of acceptance of level of care. CONCLUSIONS: Identifying patients with advanced dementia at the end of life allows the development of a hospice care plan considering symptom needs, comfort degree and wellbeing, and involving consensus decisions about care proportionality with the family. Should an acute decompensation occur, coordination with the available social and healthcare resources is key for implementing the decisions agreed between the healthcare team and the primary caregiver

Needs in palliative care in institutionalized people with advanced dementia: A multidimensional approach

Palliative Care is an appropriate typology of care for institutionalized older people with Advanced Dementia. It is necessary to take into account their unique needs and circumstances to guarantee a good quality of life and satisfaction with the health care received. The aim of this study was to identify the needs in Palliative Care associated with institutionalized people with Advanced Dementia. An explo-ratory two-stage qualitative study was developed. After a narrative literature re-view, all the phenomena related to the subject were identified as being a possible need in palliative care. This data was discussed and evaluated by two focus group with Portuguese and Spanish experts in the fields of Geriatrics, Psycho-geriatrics, Neurology, Geriatric Nursing, Psychology and Continuity Care. The needs in Pallia-tive Care were identified and categorized into seven dimensions: physical, psycho-logical, social, spiritual, economic, legal and environmental. The identification of these needs is the first step to ensure the provision of Palliative Care with quality and adapted to the particularities of each older person institutionalized

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Adaptación y validación de la versión española de la escala de evaluación de dolor en personas con demencia avanzada: PAINAD-Sp / Adaptation and validation of the Spanish version of the Pain Evaluation Scale in patients with advanced dementia: PAINAD-Sp

Introducción. El dolor está considerado como un grave problema en el entorno residencial afectando entre un 49 y un 83% de los residentes. El proceso evolutivo de la enfermedad de Alzheimer puede conllevar dificultades de comunicación y comprensión de las escalas de evaluación de dolor, dificultando su evaluación y tratamiento. El objetivo principal de este estudio fue validar la versión española del PAINAD (PAINAD-Sp) y evaluar su aplicabilidad en un Centro Gerontológico en España. Material y métodos. Veinte usuarias diagnosticadas de demencia avanzada fueron observadas por 5 observadores con diferentes perfiles profesionales durante 5 min en 3 condiciones: reposo, durante actividad agradable y en situación de dolor. La PAINAD-Sp fue administrada simultáneamente a una escala analógica visual. Resultados. Los resultados muestran que el alfa de Cronbach se encontraba entre 0,467 y 0,827 (con una media de 0,692, que subía si el ítem de respiración se eliminaba). La fiabilidad interjueces variaba entre 0,587 y 0,956. La correlación entre la medida total en PAINAD-Sp y en una Escala Visual Analógica fue estadísticamente significativa (p < 0,05) en todas las medidas y variaba entre 0,517 y 0,868. Conclusiones. Los resultados del estudio muestran que la escala PAINAD-Sp es eficaz para medir el dolor en personas con demencia sin capacidad de comunicación. Esta escala puede ser usada por diferentes profesionales de la salud con poco entrenamiento y presenta una buena fiabilidad (AU)

Introduction. Pain in elderly people is considered a major concern in nursing home facilities affecting between 49% and 83% of the residents. Progression of Alzheimer's Disease causes more communication difficulties in patients with advanced dementia and therefore more problems to understand even the most simple pain evaluation scales. Identification and implementation of appropriate pain management strategies depends on an adequate pain assessment. Material and methods. The main objective of the study was to validate the Spanish version of the PAINAD Scale (PAINAD-Sp) and to assess its applicability in Spanish Geriatric Nursing Homes. The 20 patients diagnosed with severe dementia from a Geriatric Centre in Spain were observed by five observers with different professional profiles for 5 minutes to each participant, and PAINAD-Sp Scale was administered simultaneously to a Visual Analogical Scale-VAS. Three different observational conditions were established: resting condition, during presumably pleasant activity and during presumable painful activity. Results. Cronbach's alpha ranged between 0.467 and 0.827 (average 0.692), and rose if Breathing item was deleted. Inter-rater reliability ranged between 0.587 and 0.956. Correlation between PAINAD-Sp Scale total measures and VAS was statistically significant (P<.05) in all measures and ranged from 0.517 to 0.868. Conclusions. Findings in the study showed that the scale is useful to measure pain in non communicative patients suffering from dementia. The scale maintains good levels of reliability for different healthcare professionals even when they have little training (AU)

[Adaptation and validation of the Spanish version of the Pain Evaluation Scale in patients with advanced dementia: PAINAD-Sp]. / Adaptación y validación de la versión española de la escala de evaluación de dolor en personas con demencia avanzada: PAINAD-Sp.

INTRODUCTION: Pain in elderly people is considered a major concern in nursing home facilities affecting between 49% and 83% of the residents. Progression of Alzheimer's Disease causes more communication difficulties in patients with advanced dementia and therefore more problems to understand even the most simple pain evaluation scales. Identification and implementation of appropriate pain management strategies depends on an adequate pain assessment. MATERIAL AND METHODS: The main objective of the study was to validate the Spanish version of the PAINAD Scale (PAINAD-Sp) and to assess its applicability in Spanish Geriatric Nursing Homes. The 20 patients diagnosed with severe dementia from a Geriatric Centre in Spain were observed by five observers with different professional profiles for 5 minutes to each participant, and PAINAD-Sp Scale was administered simultaneously to a Visual Analogical Scale-VAS. Three different observational conditions were established: resting condition, during presumably pleasant activity and during presumable painful activity. RESULTS: Cronbach's alpha ranged between 0.467 and 0.827 (average 0.692), and rose if Breathing item was deleted. Inter-rater reliability ranged between 0.587 and 0.956. Correlation between PAINAD-Sp Scale total measures and VAS was statistically significant (P<.05) in all measures and ranged from 0.517 to 0.868. CONCLUSIONS: Findings in the study showed that the scale is useful to measure pain in non communicative patients suffering from dementia. The scale maintains good levels of reliability for different healthcare professionals even when they have little training.

Evaluación breve del estado cognitivo de la demencia en estadios avanzados: resultados preliminares de la validación española del Severe Mini-Mental State Examination / Short evaluation of cognitive state in advanced stages of dementia: preliminary results of the Spanish validation of the Severe Mini-Mental State Examination

Introducción. La evaluación cognitiva de pacientes con demencias avanzadas es una necesidad no cubierta de forma adecuada, por lo que es necesario desarrollar herramientas que permitan obtener información del estado cognitivo y los recursos con los que aún cuentan estos sujetos. El presente trabajo realiza el estudio de validación al castellano de la escala Severe Mini-Mental State Examination (SMMSE). Material y métodos. Participaron 47 sujetos con demencia avanzada (Mini-Examen Cognoscitivo [MEC] < 11), evaluados con las escalas Global Deterioration Scale de Reisberg, MEC, SMMSE y Severe Cognitive Impairment Profile. Resultados. Todos los ítems que componen la prueba mostraron una buena capacidad de diferenciación. La prueba mostró una alta consistencia interna (α=0,88), y buena fiabilidad test-retest (0,64-1,00; p<0,01) e interjueces (0,69-1,00; p<0,01), tanto para la puntuación total como para cada uno de los ítems. La validez de constructo se analizó mediante la correlación con el MEC (r=0,59; p<0,01). Además, se dividió la muestra entre sujetos con MEC 0-5 y MEC>5, hallando que la correlación entre las puntuaciones en SMMSE y MEC era significativa en el grupo de MEC 0-5 (r=0,55; p<0,05), mientras que no lo era en aquellos con MEC>5. Asimismo se encontraron diferencias de puntuación en SMMSE, pero no en MEC, entre los tres grupos de GDS (5, 6 y 7) (H=11,1; p<0,05). Conclusiones. El SMMSE es un instrumento de evaluación del deterioro cognitivo avanzado que amplía el rango inferior de medida del MEC evitando el «efecto suelo». A partir de nuestros resultados el instrumento puede ser considerado válido y fiable, así como rápido y fácil de administrar(AU)

Introduction. The cognitive assessment of patients with advanced dementia needs proper screening instruments that allow obtain information about the cognitive state and resources that these individuals still have. The present work conducts a Spanish validation study of the Severe Mini Mental State Examination (SMMSE). Material and methods. Forty-seven patients with advanced dementia (Mini-Cognitive Examination [MEC]<11) were evaluated with the Reisberg's Global Deterioration Scale, MEC, SMMSE and Severe Cognitive Impairment Profile scales. Results. All test items were discriminative. The test showed high internal (α=0.88), test-retest (0.64 to 1.00, P<.01) and between observers reliabilities (0.69-1.00, p<0.01), both for scores total and for each item separately. Construct validity was tested through correlations between the instrument and MEC scores (r=0.59, P< 0 .01). Further information on the construct validity was obtained by dividing the sample into groups that scored above or below 5 points in the MEC and recalculating their correlations with SMMSE. The correlation between the scores in the SMMSE and MEC was significant in the MEC 0-5 group (r=0.55, P<.05), but not in the MEC>5 group. Additionally, differences in scores were found in the SMMSE, but not in the MEC, between the three GDS groups (5, 6 and 7) (H=11.1, P<.05). Conclusions. The SMMSE is an instrument for the assessment of advanced cognitive impairment which prevents the floor effect through an extension of lower measurement range relative to that of the MEC. From our results, this rapid screening tool and easy to administer, can be considered valid and reliable(AU)

[Short evaluation of cognitive state in advanced stages of dementia: preliminary results of the Spanish validation of the Severe Mini-Mental State Examination]. / Evaluación breve del estado cognitivo de la demencia en estadios avanzados: resultados preliminares de la validación española del Severe Mini-Mental State Examination.

INTRODUCTION: The cognitive assessment of patients with advanced dementia needs proper screening instruments that allow obtain information about the cognitive state and resources that these individuals still have. The present work conducts a Spanish validation study of the Severe Mini Mental State Examination (SMMSE). MATERIAL AND METHODS: Forty-seven patients with advanced dementia (Mini-Cognitive Examination [MEC]<11) were evaluated with the Reisberg's Global Deterioration Scale, MEC, SMMSE and Severe Cognitive Impairment Profile scales. RESULTS: All test items were discriminative. The test showed high internal (α=0.88), test-retest (0.64 to 1.00, P<.01) and between observers reliabilities (0.69-1.00, p<0.01), both for scores total and for each item separately. Construct validity was tested through correlations between the instrument and MEC scores (r=0.59, P<0.01). Further information on the construct validity was obtained by dividing the sample into groups that scored above or below 5 points in the MEC and recalculating their correlations with SMMSE. The correlation between the scores in the SMMSE and MEC was significant in the MEC 0-5 group (r=0.55, P<.05), but not in the MEC>5 group. Additionally, differences in scores were found in the SMMSE, but not in the MEC, between the three GDS groups (5, 6 and 7) (H=11.1, P<.05). CONCLUSIONS: The SMMSE is an instrument for the assessment of advanced cognitive impairment which prevents the floor effect through an extension of lower measurement range relative to that of the MEC. From our results, this rapid screening tool and easy to administer, can be considered valid and reliable.