Mental Burden Experienced by, and Factors Affecting the Emotions of, Surrogate Decision-makers for Older Adults with Dementia Residing in Long-term Care Welfare Facilities

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  • Makino Kumiko
    Center for Clinical Research, Hamamatsu University Hospital Research Association for Community Health
  • Sugisawa Hidehiro
    Graduate School of Gerontology, J.F. Oberlin University
  • Shirayanagi Satomi
    Former Faculty of Nursing, Hamamatsu University School of Medicine

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Other Title
  • 施設内看取りを代理意思決定し看取る過程で家族が経験した精神的負担と代理意思決定に対する想い
  • 施設内看取りを代理意思決定し看取る過程で家族が経験した精神的負担と代理意思決定に対する想い : 介護老人福祉施設に入所する認知症高齢者の家族の場合
  • シセツ ナイ ミトリ オ ダイリ イシ ケッテイ シ ミトル カテイ デ カゾク ガ ケイケン シタ セイシンテキ フタン ト ダイリ イシ ケッテイ ニ タイスル オモイ : カイゴロウジン フクシ シセツ ニ ニュウショ スル ニンチショウ コウレイシャ ノ カゾク ノ バアイ
  • 介護老人福祉施設に入所する認知症高齢者の家族の場合

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Abstract

<p>  There is a lack of empirical studies in the existing literature investigating families in Japan who chose hospice care in long-term care welfare facilities. Therefore, this study aimed to: (1) explore the aspects of the mental burden experienced by family members who chose hospice care for older adults with dementia residing in long-term care welfare facilities; and (2) identify the factors affecting family members’ emotions about surrogate decision-making. Data from semi-structured interviews with 16 family surrogate decision makers were analyzed using the modified grounded theory approach. Results regarding the aspects of mental burden indicated that: (1) at the time of surrogate decision-making, family members experienced indecision and felt great responsibility at having to make a choice where the wishes of the older adult or other relatives were unknown; and (2) subsequent to decision-making, the family experienced sadness at the older adult becoming progressively thinner, resulting in ambivalence about the decision, and felt sorrow over the older adult’s impending death. Results for the factors affecting emotions about surrogate decision-making indicated that family members’ emotions were influenced by the decision-making process as well as by satisfaction with hospice care at the facility. These findings suggest the need for continuous support even subsequent to surrogate decision-making.</p>

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