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Let’s Think About Life with Dementia #3　 “I live alone, but I’m not alone”―A Critical Role of Visiting Nurses

 

Many older people like to continue their own way of living even when they live alone with dementia. The key to making it happen, I have always felt, is how supporters can value these older people’s wisdom, which they have built over the years, and their wishes to remain who they are. In March 2025, the Tokyo Metropolitan Geriatric Medical Center published the guidebook titled “Supporting Independence of Older People Living Alone with Dementia: Practice Guide fo
r Visiting Nurses.” This guidebook provides a useful checklist and practical tips for visiting nurses who support older people living alone with dementia. I had an opportunity to be part of this research as a committee member.

 

The checklist was developed based on detailed interviews with visiting nurses, who had extensive experience in supporting older people living alone with dementia, as well as opinions of experts in this area. It summarizes attitudes, perspectives, and support methods emphasized on the frontline in the following steps:

·         Step 1: Getting into the user’s life and building relationships through a series of dialogues (4 items)

·         Step 2: Assessing the user’s physical and mental state and daily living, with a holistic understanding of the person (6 items)

·         Step 3: Providing personalized support in collaboration with multiple professionals (5 items)

·         Step 4: Making judgements and supporting decision-making, foreseeing future changes (3 items)

 

Let me share with you an example in the guidebook.

Ms. D (age 80) was in the middle stage of dementia, continuing to live alone with the support of visiting nurses. She would always welcome visiting staff members with a big smile. She was also able to enjoy conversation with jokes. But since a certain point, her smile had disappeared and her rooms had been left messy. She didn’t seem like her usual self. On another day, a home care worker happened to find Ms. D far from her home, getting lost and standing still. Suspecting that something must be going on, her visiting nurse contacted Ms. D’s family and found that her older sister had passed away about a month earlier.

As this example shows, we sometimes notice changes in the person’s physical and mental health, as well as daily living, from small differences in their expressions and behavior. But the person may not be able to effectively put their worry and sorrow into words. We certainly should listen to the person’s voice; in many cases, however, their words alone are insufficient for understanding the situation.

 

Although I’m not a visiting nurse, involvement in this research has reminded me how important it is for visiting nurses to share the attitude focusing on detecting even the smallest changes, while collaborating with other professionals. Even if they cannot immediately find out what has happened, like Ms. D’s case, they can notice small signs in the person’s expressions, words, behavior, disorganized living space, and other changes. It is essential that supporters share these signs as they carefully and attentively engage with the person. This process requires a multifaceted understanding, including not only medical but also psychological and social aspects, as well as seamless support.

 

The point is that the person can feel connected to others even if they live alone. I strongly feel this possibility from the stories of people with dementia and supporters featured in the guidebook. Older people can continue to live in their own way with peace of mind, even if they live alone with dementia. To achieve this, visiting nurses and other various professionals need to work more collaboratively and foster connections with the local community as the foundation of the person’s living. And most of all, we need to remind ourselves that support starts with empathy, walking together with the person here and now.

You can download the guidebook from the following URL (in Japanese):

“Supporting Independence of Older People Living Alone with Dementia: Practice Guide for Visiting Nurses”

https://www.tmghig.jp/research/cms_upload/1b79188a1fdd5d515251f5756bf9fb40.pdf

 

Published by: Tokyo Metropolitan Geriatric Medical Center

Supported by: The National Association for Visiting Nurse Service

Edited by: Shuji Tsuda, Tomoko Nakajima, Emi Kaneda

 

Taeko Nakashima

Faculty of Health Management　Department of Social Health and Business Management

Nihon Fukushi University

https://www.nfu.ne.jp/ (in Japanese)

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