Monday, 27 May 2019

Facing dementia alone

A growing number of seniors live alone and also suffer from dementia. How do they battle the illness, with no one to watch over them?
By Janice Tai, Social Affairs Correspondent, The Sunday Times, 26 May 2019

The mild-to-moderate dementia suffered by Mr Saravanamuthu Marimuthu, 71, means he cannot remember to brush his teeth or have a bath in the morning, much less take the eight tablets he needs every day for his chronic illnesses.

If there was no one to give him a change of clothes after his shower, he would keep wearing the same things.

Yet Mr Saravanamuthu has managed to live alone in his one-room rental flat in Ang Mo Kio for more than a decade, with dementia his closest "companion" since he was diagnosed with it in 2016.

"I know I have a little bit (of dementia). I can't remember my own name sometimes," said Mr Saravanamuthu, fondly known as "Roy" to his neighbours and staff from the AWWA dementia day care centre situated at the bottom of his block.

As Singapore's population ages, he is one of a growing group of seniors who not only live alone or have dementia, but are also faced with the potentially terrifying prospect of both, battling the scourge alone.

Still, as his case demonstrates, it may be possible for seniors to continue living alone, at least for a while, with the help of social service organisations such as AWWA.

Every morning, a home care associate knocks on Mr Saravanamuthu's door to wake him up. When he opens the door, she reminds him to brush his teeth, shave and take a bath. She also hands him a fresh set of clothes and stands by to watch as he takes his medication.

Then she takes him downstairs to the AWWA dementia day care centre. Once a week, she helps him do his laundry or clean his house.

For the weekends, she will put out his tablets in two small cups - one for Saturday and one for Sunday.

"Sometimes, he will take them but he may forget. Sometimes, I come on Monday and he is wearing the same clothes and I don't know if he had taken any showers over the weekend," said Ms Devi Nair, 39, a home care associate with AWWA.

"But his dementia seems not to have gotten worse. I think it's because we let him do things for himself that he does not forget life skills. He is also meaningfully engaged with eating, activities and friends at the centre downstairs."

GROWING NUMBERS

The number of people with dementia who endure the "frightening isolation" of living alone will double to nearly a quarter of a million in Britain over the next 20 years, an Alzheimer's charity there predicted this month.

There is no national data on the number of people with dementia who live alone in Singapore, though figures for those who live alone as well as those who have dementia have both surged over the years.

One in 10 people 60 years and above has dementia now, and the proportion rises to one in two among those aged 85 and older. An estimated 103,000 people will have dementia by 2030.

The number of seniors living alone was 41,000 in 2016 and is expected to rise to 92,000 by 2030.

Associate Professor Philip Yap, director of the Geriatric Centre at Khoo Teck Puat Hospital, said: "Since the prevalence of dementia is said to be 10 per cent in seniors, by extrapolating these figures, we can expect more than 4,000 seniors with dementia living alone today and there will be more than 9,000 of them in 2030."

Hospitals and charities such as Alexandra Hospital, the Alzheimer's Disease Association (ADA) and AWWA also confirm they are seeing more seniors with dementia living on their own.

"Many of them are single or childless without any living relatives. Some may have estranged relationships with their children or relatives. They are generally lowly educated, have little savings and do not know where to turn to for help," said Mr Kavin Seow, senior director of the elderly group at Touch Community Services.

THE RIGHT TO LIVE AT HOME

Generally, as society evolves and home care options expand, there will be more who choose to grow old in their own home, and the same goes for people living with dementia.

"Their home and a familiar environment, such as the local hawker centres and shops, are a form of security; similarly, they'll know how to work the washing machine and cooker because they've been doing it for decades," said Associate Professor Reshma Merchant, head of the division of Geriatric Medicine at National University Hospital.

"Suddenly uprooting them and moving them to live with their children can cause distress, create insecurity and accelerate functional and cognitive decline. People living with dementia have the right to live on their own if they want to."

This right should be called into question, and possibly withdrawn, said Prof Reshma, only if there is evidence to suggest that they are a danger to themselves or to others.

In the meantime, a growing army of community organisations is available to lend support to solitary seniors by offering household help, meal delivery, or befriending and nursing services.

ADA said seniors with dementia who live alone may be especially lonely if they isolate themselves further. Some may be ashamed to reveal their condition to others in the community.

There are other unique challenges for this group of people.

"The progressive nature of the disease may mean that though the seniors may have adjusted to certain changes in their lives, such as receiving services or allowing for home modifications, they can decline further, and then more services have to be brought in and this can be very difficult for the seniors to accept," said Dr Chen Shi Ling, a physician at Hua Mei Clinic at ComSA Whampoa Centre. ComSA stands for Community for Successful Ageing.



END UP IN NURSING HOMES?

Some people with dementia will also find themselves in the quandary of not being ill enough to have to go to a nursing home and yet not being able to live alone safely, said Dr Tan Li Feng, associate consultant of the healthy ageing programme at Alexandra Hospital.

"Many eventually end up in nursing homes. Often social workers in the community who keep an eye on them discover them in increasingly unkempt and unsafe states and will often call for an ambulance or the police to take them to hospital and they will end up in the care of the state," said Dr Tan.

Going to a nursing home was indeed an option that Mr Saravanamuthu's family and AWWA considered when he was diagnosed with dementia as there was no one to take care of him.

The decision was taken to let him be independent, said Ms Nisha Abdul Kader, senior social worker at AWWA dementia day care centre. "We decided to see if he could live on his own for a few days, while receiving personal care services and being engaged daily at our centre, and it worked. He became more social and his relationship with his daughter improved when she saw that he was clean and tidy."

Another agency, Touch Community Services, reaches out to seniors with dementia who live alone through the Community Kin Service scheme.

The government scheme allows charities to manage the money and day-to-day expenses - such as for healthcare, household and municipal needs - of seniors who have lost their mental capacity, so that they can continue to live independently at home.

This is done through the authority of a court order and under the close supervision of the Office of Public Guardian.

According to the Ministry of Health and the Agency for Integrated Care, 39 community outreach teams have been established to reach out to persons at risk of, or with, dementia. They provide basic emotional support to seniors and their caregivers, and check on them through regular home visits.

"By engaging in community outreach activities like health and nutrition talks, persons who need medical or social support can also be identified and referred to the relevant services. Over 210,000 people have benefited from the outreach efforts of such teams, and we hope to reach out to more in the community with 50 teams by 2021," said its spokesman.

FAMILY SUPPORT NEEDED

Most community service providers are able to support the person during working hours, but there is still a lack of support at night, and during weekends and public holidays, said Dr Chen. This is where the family can come in.

Mr Teng Seng Chye, 78, for instance, is able to live alone in a two-room rental flat in Whampoa despite being diagnosed with moderate dementia four years ago because he has the support of his siblings as well as care workers at AWWA.

His dementia has progressed to a stage where he is unable to bathe himself and he sometimes loses control of his bowels.

However, he can still maintain some personal hygiene because he is taken daily to a dementia day care service run by the Tsao Foundation at the Whampoa Community Club, where staff give him a bath and keep him occupied through activities.

An older brother who lives nearby makes sure Mr Teng takes his medication every day and his sister also comes by three times a week to clean his house.

"I am worried as it is not safe and he may fall when he goes out to buy food or when he goes to the toilet," said his sister, Madam Teng Lai Chan, 76.

Five years ago, he fell in the toilet and his siblings found him more than a day later when he did not pick up the phone or answer the door.

Despite such harrowing incidents, Mr Teng still wants his independence.

"I have been living here since 1977. Even if my siblings have extra room for me, I don't want to go," he said in Hokkien.

Dr Chen said dementia may affect one's ability to understand the full impact of one's choices.

"However, this does not mean that their desires and wishes should be ignored. It is crucial to support them every step of the way, and facilitate choices and decision-making based on their priorities and what they value in life," she said.

Mr Teng used to get angry if the words "nursing home" were brought up with him, said his sister.

But he seemed to feel differently about it now. She recently asked him again, knowing that he may inevitably have to move into a nursing home when his condition deteriorates further.

This time, his response surprised his sister.

He said, with one eye on the television: "Can try, can go and have a look."



















What we know about dementia
The Sunday Times, 26 May 2019

In Singapore, the prevalence of dementia is 3.4 per cent for those aged between 60 and 74. The figure jumps to nearly 22 per cent for those aged 75 to 84 and then to 56.2 per cent for those 85 and older.

SIGNS

Early stage: Forgetfulness, losing track of time, becoming lost in familiar places.

Middle stage: Forgetting recent events and people's names, becoming lost at home, increasing difficulty with communication, needing help with personal care and experiencing behavioural changes, including wandering and repeated questioning.

Late stage: Becoming unaware of time and place, difficulty recognising relatives and friends, increasing need for assisted self-care, difficulty walking and experiencing behavioural changes that may escalate and include aggression.

TYPES OF DEMENTIA

Alzheimer's disease is the most common form and contributes to 60 to 70 per cent of cases. Other major forms include vascular dementia, dementia with Lewy bodies (abnormal aggregates of protein that develop inside nerve cells), and a group of diseases that contributes to frontotemporal dementia (degeneration of the frontal lobe of the brain). Boundaries between different forms of dementia are indistinct and mixed forms often co-exist.

TREATMENT

There is no treatment available to alter dementia's progression nor is there a cure. Clinical trials to find treatments are ongoing.

MANAGEMENT

Much can be offered to support and improve the lives of people with dementia and their carers and families. These include:

• Early diagnosis

• Optimising physical health, cognition, activity and well-being

• Identifying and treating accompanying physical illness

• Detecting and treating challenging behavioural and psychological symptoms

• Providing information and long-term support to carers

IMPACT ON FAMILIES, CAREGIVERS

Dementia can be overwhelming for the families of affected people and for their carers. Physical, emotional and financial pressures can cause great stress to families and carers, so they will need support from health, social, financial and legal systems.

SOURCES: WORLD HEALTH ORGANISATION, INSTITUTE OF MENTAL HEALTH


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