Expanding the Social World of Persons living with dementia

Many caregivers take on full time caregiving. The CNA insider showed the caregiver Nadia Naeng put her life on hold to assume full time caregiving. She held off her wedding and quitted her job in 2019, to care for her mother with stroke and many other medical conditions. She had to bring her mother for many hospital appointments and attend to her daily needs. Her only respite was during her mother's twice-weekly physiotherapy sessions at a senior care centre. Nadia struggles with loneliness, loss of self-identity and having to navigate depression, according to the CNA insider series, Altered Lives.

Reflecting on my mother's social history: She lived alone for three to four years. She was attending Sunday services regularly for many years. However, she stopped attending in 2017 due to her increased in pain in her legs. The only social connection she had was with the few elderly that she encountered when she went for breakfast in her favourite food shop every morning. She spent 23 hours of her day alone at home. I believe the social isolation is one of the factors that worsen her cognitive function and dementia.

As I embark on this caregiving marathon, I too wanted to thrive and not burnt out halfway. I want to complete this journey with her. I feel that I will need to enlist the help of other professionals to assist in this caregiving journey. According to this book "Words for a Journey: The Art of being with dementia" by Takshi Iba & Makoto Okada, When the same people are always around, the cared person will be confined to a very small world. Therefore, I decided to set up opportunities to expand her social world through these 4 areas:

1) Respite services:

My mother attends the AWWA Dementia Day Care (DDCC) 2019 as well as the Awwa Rehabilitation Centre 2 times a week.

2) Connecting with extended family members once a week

3) Bringing the world into her home: Regular visits by friends for dinner (Hospitality Dinners)

4) Asking for help through getting transport from a church member for her to attend her social activities

1) AWWA Dementia Day Care (DDCC) and AWWA Rehabilitation Centre

I took the advice of my neurologist in 2018 and discussed the option of day care with her. She was very resistant in the first place and even in the first 2 to 3 years, she could not see the benefit of attending such a day care centre. However, over time, she was able to build new friendships with the staffs at the Dementia Day Care.

The staffs also go an extra mile to call her on the days when she was unwell or on days when she does not attend the sessions at the centre. The care manager at the centre also communicate closely with me on the care plan for her.

DDCC provides maintenance day care services to clients who have mild to severe dementia. It aims to slow down the deterioration of clients’ physical and mental functions, thus delaying the need for institutionalisation. DDCC also seeks to provide respite for caregivers of elderly persons diagnosed with dementia.

Singapore imposed a circuit breaker in March 2020 to reduce the spread of the Covid-19. Though both of the DDCC and rehabilitation were closed, both came up with creative ways to conduct the sessions virtually.

They provided

1. Once a week virtual tele physiotherapy exercises to strengthen my mum’s legs and balancing. The Physiotherapist also taught her hand washing and wearing of mask to prepare her to go back to rehabilitation once the centre is opened.

2. The care coordinators and occupational therapist also provide once a week occupational therapy and activities to keep her mind stimulated and engaged.

3. I also had to opportunity to participate in one of the exercise session provided for caregivers.

Virtual Leg strengthening exercises by staff at Dementia Day Care

A home made mask activity with the occupational therapist and staff at Dementia Day Care

These interventions helped to lessen the caregiver stress that was increased during the Covid-19 pandemic.

The multidisciplinary team approach at AWWA has helped my mother during the circuit breaker (CB) and prevent drastic deterioration of her dementia.

2) Social connectivity with other external families are also important

Once a week, my husband and I will cook for my mother's sister (auntie) and invited her to eat with us. This also helps to build stronger family ties and provided an opportunity for my mother to speak to my auntie and maintain the social ties.

3) Bringing the world into her home

One of my colleague who is good at singing Chinese songs also came over to sing with my mother. Just yesterday, my mother who often refused going out, agreed and joined this colleague and I for a visit to Night Safari. The smile on her face told me that she enjoyed it tremendously.

This is a view that we saw as we travelled from our home to the Mandai Zoo, Night Safari, Singapore.

3) Building a close knitted community

Recently, I am introduced to a family who live near us and is very kind to offer us transport to the church that my mother is attending. She enjoys the singing and is able to sing along with the songs.

As the number of elderly with dementia and other co-morbidities increases and this caregiving role falls on the family, it is important to gather all the resources around to keep the person living with dementia connected in the community.

I have seen how her social world has expanded since 2017. I have read different accounts of how many sufferers tried to hide their diagnosis and they live in isolation with their caregivers. The diagnosis has shrunk not only their brains but their world.

I have learnt to be not shameful to ask for help first from your own extended family and even friends. It may take some planning and financial considerations to include respite care from Dementia Day care, home nursing services or even from the Respite-pilot project.

Understanding my own limitations and being intentional to be a thriving caregiver is necessary for the good of the person living with dementia and also for my own family and friends, co-workers.

I am not alone. You are not alone. Let us encourage each other to be a thriving caregiver. Let us help our loved ones expand their social world so that they can create many social connections and many people will come to understand more about this illness that is becoming so prevalent. As a community, we can help make the society more dementia friendly, inclusive and more thriving.