Family caregivers’ perspectives on dementia-related dressing difficulties at home: The preservation of self model

Abstract

Alzheimer's caregiving literature acknowledges dressing as a major daily stressor but research on this topic is negligible. A qualitative grounded theory approach was used to explore Alzheimer's family caregivers' perspectives about issues that arise when their family members lose the ability to dress independently. Three focus groups and seven individual interviews were conducted and audio recorded with 25 information rich caregivers. Constant comparative analyses and coding of the transcripts identified six major themes leading to a 'Preservation of Self Model: Care Recipient to Care Giver' that portrays the caregiving trajectory. Initially, caregivers tried to protect the self dignity of the family member by maintaining usual routines and absorbing blame for difficulties. Dressing 'battles' occurred and caregivers learned management through trial and error. Crossing adult-child-gender role boundaries escalated discomfort. When facing unrelenting demands, concern shifted to preservation of the caregivers' health and self. Results suggest that caregivers would benefit from more pro-active dressing counseling to shorten the trial and error periods, dressing aids more relevant to dementia and more knowledgeable helpers. The preservation model can facilitate understanding of the caregiving trajectory and guide intervention support.

Dignity as a guiding principle for family care partners in the care of an old relative with dementia

“…Researchers such as Bowers and Mahoney et al. have indicated that the phenomenon of family care partners’ concern related to the value of dignity is persistent. Proceeding from the theoretical contributions of Nordenfelt and Stevens et al.…”

Prototype Development of a Responsive Emotive Sensing System (DRESS) to aid older persons with dementia to dress independently

“…The numerous dressing and interpersonal challenges experienced in family caregiving as well as extensive details on the qualitative methodology have been reported previously 9 . This paper uniquely reports the caregivers’ reactions to the proposed technology and their recommendations to improve usability for PWD.…”

“…Direct aids to help caregivers manage dressing problems also are limited. Alzheimer’s caregivers complain that commercially available dressing aids such as button-hooks and stocking pull-ons are designed for persons with physical disabilities and are too complex and confusing to those with dementia 9 .…”

La influencia del apoyo social en cuidadores de personas con deterioro cognitivo o demencia.

“…Una mayor frecuencia de cuidado se relaciona con más sobrecarga y a su vez, más sobrecarga se relaciona con menos satisfacción". Apoyan tan afirmación autores como Fauth, Femia & Zarit (2016), Mahoney, LaRose & Mahoney (2015), o Prick, de Lange, Twisk & Pot, (2015).…”

“…Por el contrario, la demanda de cuidados conduce a factores de riesgo como la sobrecarga o el aislamiento social, los cuales deben ser analizados (Mahoney, LaRose & Mahoney (2015) El aislamiento se refiere a la condición de no tener vínculos con los demás, pudiendo desembocar en una desconexión social del sistema (Ferreira Alves, Magalhaes, Viola & Simoes, 2014). Consecuentemente, se ha encontrado una fuerte asociación entre el aislamiento social y la depresión, independientemente de la soledad, incluyendo además resultados negativos como la mortalidad y el deterioro cognitivo (Medvene et al, 2015).…”