Dementia is a syndrome that usually occurs progressively. It is when someone’s ability to process thought is deteriorating faster than normal ageing. Although there are some cases where someone experiences Dementia symptoms early, the syndrome typically affects the elderly. [1]

Aside from affecting the patient, Dementia can also affect their caregivers. Some people find that having loved ones with Dementia is a tough reality to face. Therefore, it can result in stress or depression not only to the Dementia patient, but their caregivers as well.

Ivan: As a doctor who specialises in caring for people with Dementia, I have written this educational article with Dr Nicolas Kon about Dementia and how to care for Dementia patients. I hope this article is able to help you understand Dementia patients.

Nicolas: I specialise in the neurological and biological treatment and management of Dementia, so I will answer questions about how we can treat Dementia medically.

How I ended up helping Dementia patients

Ivan: My interest in Dementia work peaked because I have 2 relatives that were diagnosed with Dementia. As part of my work, I was previously attached to Khoo Teck Puat Hospital for 8 months. From there, I was able to learn from a team of doctors and nurses in Dementia care.

There, I had a lot of opportunities to interact with different kinds of Dementia patients. I was also able to meet patients who were newly diagnosed coming back for regular treatment programmes.

I view senior citizens with Dementia like other lovely senior citizens. During my course of work, I do not reduce them to just a ‘Dementia patient’. Instead, I treat patients with humanity and try to communicate with them, taking an interest in their lives. From stories of their youth, one gets to know more of the kind of people they once were.

Signs and symptoms of Dementia

Different people experience different signs and symptoms. There are 3 stages of Dementia: [2]

The early stage

Ivan: This stage is often overlooked because the symptoms do not seem significant. Commonly, the symptoms are:

• Forgetfulness: patients who are experiencing the early stage of Dementia often forget things. Some people may consider their loved one as a generally forgetful person. Thus, this symptom is often overlooked.
• Losing track of time: this might sound insignificant as people in general often lose track of time. However, people who have Dementia lose track of time more often than others.
• Becoming lost in a familiar place: it is highly common for people who have Dementia to get lost in a familiar place. For instance, they can forget their way home from a mall they have visited many times in the past.

The middle stage

During the middle stage the symptoms become more visible. This include:

• Forgetting recent events and people’s names.
• Not knowing the way around the house.
• Not being able to communicate properly; forgetting how to say certain words, losing their train of thoughts.
• Changing of behaviour; asking repeated questions.

The late stage.

During the late stage, the symptoms become more severe:

• Being completely unaware of time and place.
• Difficulty in recognising familiar faces like those of family and friends.
• Physical activities are limited, requiring assistance.
• Changing of behaviour; might become aggressive or depressed, unpredictable.

Causes of Dementia

Nicolas: Dementia is a neurocognitive disorder caused by brain cell damage. The damage causes the brain cells to communicate abnormally and affects the patient’s behaviour, thinking ability, and feelings. [3]

In addition, different parts of the brain that are damaged contribute to the difference in diseases that the patients have. Dementia can also be caused by accidents that are involved in injuries or certain diseases such as: [4]

• HIV
• Alzheimer’s disease
• Stroke
• Oxygen deprivation
• Parkinson’s disease
• Head trauma, etc.

However, some types of Dementia are non-progressive and reversible. For non-progressive Dementia, the changes remain stable over time. Whereas reversible Dementia is usually caused by:

• Mental illness,
• Metabolic problems,
• Side effects of certain medication,
• Infections, etc. [5]

Types of progressive Dementia

Nicolas: Progressive Dementia is a type of Dementia that gets worse and is irreversible. Common progressive Dementia includes: [6]

Azheimer’s disease

Alzheimer is common among elders and it can be passed down through generations. Patients with Alzheimer’s disease have plaques and tangles in their brains. Plaques and tangles, which are clumps of protein, damage the healthy neurons and fibres that connect the neurons.

Vascular Dementia

Vascular Dementia is the second most common type of Dementia. This type of Dementia is caused by damage to the vessels that distribute blood to your brain. These damaged vessels can cause stroke and damage brain fibres.

Lewy body Dementia

The cause of Lewy body Dementia is abnormal balloon-like clumps of protein in their brains that cause them to have visual hallucinations, acting out their dreams, and having problems with focus and attention.

Frontotemporal Dementia

People who have frontotemporal Dementia are characterised by the breakdown of nerve cells and connections to the frontal and temporal lobes of the brain. Frontotemporal Dementia affects the patient’s behaviour, personality, and language abilities.

Mixed Dementia

Mixed Dementia is when patients have more than one type of Dementia. For instance, one person can have Alzheimer’s disease alongside vascular Dementia. The symptoms of mixed Dementia vary, depending on the type of Dementia that the patient has.

Why is it necessary for the public to be informed about Dementia

Ivan: Singapore has an ageing demographic. This means that there will be more and more people that might be diagnosed with Dementia. It is highly likely that many of us will come across someone living with Dementia.

Dementia can happen to anyone, including your loved ones such as: [7]

• Your family members,
• Extended family members,
• Neighbours,
• Friends,
• Colleagues.

Due to the increasing prevalence and increasing number of those with this condition, if we do not correctly understand Dementia, we will be unprepared for the challenges it brings. We should take care to teach our loved ones what Dementia is so that they do not misunderstand people with Dementia. It is all too easy to label people with Dementia as ‘useless’ or ‘burdensome’.

Often, when we understand the condition for what it is, we tend to be more emphatic towards both behaviours and symptoms that sufferers display.

Some challenges that Dementia caregivers face

Ivan: It is normal for you to feel lost if you are taking care of someone with Dementia. You might not have a full understanding of what it means to take care of someone that has Dementia.

It is common for caretakers to fall into depression. A diagnosis of Dementia in some sense might mean that your loved ones are not going to be the same again. This is made worse by the fact that there is no cure and is irreversible.

Dementia gives caregivers an emotional challenge. At times, it is hard to come to terms with the diagnosis as there are many changes that need to be done such as lifestyle. Be kind to yourself and take care. There is no shame in reaching out to others for help in taking care of Dementia sufferers.

Solutions that can be implemented for people living with Dementia

Ivan: There is no simple one-size-fits-all solution. The reason is that Dementia requires a high level of personalized care. In Dementia care, Person-Centered Care (PCC) is a term that one will hear often. People living with Dementia need these PCC because each of them has their own life history, personal preferences and dislikes. [8]

With PCC, we will try to give what patients like and avoid what they dislike. This allows patients to contribute and experience joy in their daily life. The right kinds of engagement also helps patients to maintain their independence for as long as possible.

Depending on the symptoms that these patients manifest, some simple modifications can be done to ensure the best kind of care. [9]

Colour contrast

As seniors grow older, their ability to see colour will also be affected. By having a good colour contrast, we can help these seniors locate things better.

Examples would be:

• Contrasting plate, bowls, and tabletops - to see better and reduce mess made when eating
• Toilet bowl vs toilet seat - to help loved ones aim better during urination

Elderly aids

Seniors living with Dementia are similar to other seniors of old age. This means that their mobility as well as physical health will degenerate over time. Caregivers can help to install elderly aids such as grab bars and anti-slip flooring in the toilets to assist in daily living.

Visual cues in terms of pictures instead of words can help with communication. As Dementia worsens, understanding words will become a challenge. Using pictures will help people with Dementia relate to their environment better. Additionally, it also helps to better identify objects and their uses. These lifestyle changes are doable and should be personalised to the person that is living in that space.

What medical therapies are available to handle Parkinson’s?

Nicolas: Current research shows that Parkinson’s Disease progresses in stages, from stage 1 to 6. It is only when the disease has progressed substantially that symptoms start showing, around stage 3 or so. It is best if your doctor knows how to recognise early symptoms and discriminate them from other, similar diseases. There is research being done on new therapies everyday, such as gene therapy or cell-based therapy. In this article, I want to talk briefly about two treatments commonly used today, L-DOPA and Deep Brain Stimulation.

The ‘gold standard’ for Parkinson’s treatment is L-DOPA treatment. This medicine helps reduce the worst of the motor symptoms, such as rigidity or rest tremors. However, long-term use of L-DOPA can lead to some undesired side effects, like motor fluctuations. It can also lead to mental health disorders like psychosis or depression. That’s why L-DOPA will come with other medications to reduce the effects of these side effects.

There are also surgical options available. Currently, Deep Brain Stimulation (DBS) is the most popular surgical treatment. DBS consists of implanting a device, similar to a pacemaker, that sends electrical signals to certain areas in the brain. This constant electrical signal regulates motor ability and allows for smoother movement.

What happens when someone has an early on-set Dementia

Ivan: Someone who has early on-set Dementia has different challenges to seniors with Dementia. Emotionally, one of the challenges would be having to retire earlier than others. This can cause depression as well as self-esteem problems. [10]

Having to retire early definitely affects the family financially. In addition, it may be hard for the patient to go to a care setting meant for the elderly. For example, a Dementia daycare centre run by Alzheimer’s Disease Association (ADA) has seniors as a majority.

To tackle this, ADA has organized a separate programme for younger patients. However, this programme is only able to serve a small fraction of those with early on-set Dementia. Hence, the majority of early on-set Dementia sufferers are at home. With support, such sufferers might be able to go out, although there are very few social activities tailor-made for sufferers at the time of writing.

What people living with Dementia should do if they need help, especially those without a close relative

Ivan: Those in the early stages of Dementia may not realise that they have Dementia. Hence, they do not seek out help. There are cases where patients are aware but still would like to be independent.

It is increasingly a social issue as we see more sufferers without family support. This brings its own unique set of challenges, such as requiring multiple interventions and support from different agencies as well as stakeholders.

A senior with Dementia without any family support is a tricky issue as no one is able to ensure that they:

• Go for their medical appointments,
• Have eaten the correct medications,
• Take the correct dosage,
• Get home safely.

They are also more vulnerable to a variety of abuse. There is no clear solution for this group of people as society needs to tackle this issue as a whole. Some patients with Dementia do prefer to stay alone and be independent but they do face challenges living independently in a safe way.

A social worker is able to release a senior from his or her home when it is deemed too dangerous to stay alone. However, it is hard to make the right judgement call. Hence, a ‘wait and see’ approach is often taken. This leaves a huge impact not only on the senior but also on neighbours. Neighbours may perceive this wrongly and label these seniors negatively despite not knowing that specific senior maybe of a high-risk.

Conclusion

Dementia is a serious condition that is incurable. However, with several decades of experience caring for people with Dementia, there are now best practices that will help you take care of either yourself or others.

With the right care and environment, people with Dementia can live a more independent life than they could otherwise. You can start creating such an environment by purchasing or making your own elderly aids to place in your home.

This article was co-written with Mr Ivah Loh, founder of Forget Us Not and campaign administrator of the Lien Foundation. The Lien Foundation is a Singapore based philanthropic organisation that aims at creating social changes for seniors and children with needs.

One of the supported causes is Forget us Not, a campaign that strives to teach people from all across the social strata to create a dementia-friendly community. In less than two years, they trained almost 20,000 people, including frontline staff from supermarkets, banks, and more.

After completing medical school, Dr Kon continued his medical training in neurosurgery and neurocritical care at various institutes in the UK which include the National Hospital for Neurology and Neurosurgery (London), Charing Cross Hospital (London), Addenbrooke’s Hospital (Cambridge) as well as the National Neuroscience Institute (NNI) in Singapore.

He obtained his PhD at Imperial College London and subsequently completed his fellowship at Toronto Western Hospital, University of Toronto in Canada.

You can find Dr Kon at NeuroAsiaCare