Dementia: A Caregiver’s Guide to Helping A Loved One

Caring for a loved one living with Dementia? Learn about the condition, its symptoms, caring tips and practising self-care as a dementia caregiver.

by Calvyn Ee

The World Health Organization (WHO) estimates that 50 million people have dementia around the world. In Malaysia, a new case of dementia is diagnosed every 4 seconds; in 2015, there were reportedly 123,000 people with dementia, and that number will triple in the next 12 years.

What is Dementia?

Our memory slowly deteriorates as we age; you may even forget where you left your car keys 5 minutes after setting it down on the coffee table. This is a natural process known as age-associated memory impairment.

The WHO classifies dementia as chronic or progressive symptoms that result in severe deterioration of a person’s cognitive faculties, affecting their ability to think, remember and reason. This can also lead to, or is preceded by, changes to their mood and behaviour, and can hamper their day to day activities over time. Dementia happens due to impairments that affect the brain, either due to neurological disease or strokes.

Early signs of dementia include forgetting recent events or conversations with friends or family. As it progresses it may even lead to being unable to remember or recognize friends or family members, or even losing track of time and place.

Dementia is an umbrella term for a variety of similar abnormal changes to the brain. Alzheimer’s disease is the most common form of dementia, affecting 60 to 80 per cent of cases.

Caring for Someone with Dementia

You may be familiar with close friends and relatives who are caring for someone with dementia. In some cases, they may be staying together with the person in the same house, while others stay elsewhere. You may often be told of the stress these caregivers go through; people with dementia do not realize or understand how their condition is changing them, and that can be frustrating to deal with.

Dementia is incurable, but it is manageable through medications and adequate support. Still, some may find the journey difficult and tax to their wellbeing, and it can take a serious toll on their own health. Having to watch a loved one slowly transform into someone unfamiliar, or lose their coordination for simple tasks, can be a confusing and painful experience to bear.

People with dementia require different approaches to care for due to differences in its progression and how it affects them. Here are some useful tips and considerations for caring for a person with dementia. Whether or not you are a new caregiver, or have been providing care for someone for a long time, we hope these tips will give you useful insights into providing care for your loved ones.

Therapy/Treatment Approaches

While dementia is incurable, medical approaches can be useful to improve and preserve the brain’s functions. Activities that include memory training, mental and social stimulation, as well as physical exercises can be helpful in managing dementia and reduce risk factors for other potential health afflictions.

For therapy options, consider cognitive stimulation therapy (CST) and cognitive rehabilitation. CST is a group-based therapy session that aims to improve memory, problem-solving skills and even language to improve communication. Meanwhile, cognitive rehabilitation is a targeted, goal-oriented activity that also aims to improve memory and the ability to perform daily activities with minimal intervention. Memory boosting activities through activities will help reduce the onset or severity of dementia.

There is also reminiscence and/or life story work, which involve recounting past experiences or events, either through verbal presentation or together with physical objects like photos, video recordings and notes.

Make sure these approaches are not frustrating to the person with dementia. They should be stimulating and enjoyable experiences to help them with managing their condition. Schedule appointments for when they are at their best, but be prepared for unexpected changes to the schedule.

Get help from the medical team if you really need it, whether it may be advice or assistance.

Every individual is different, and your loved one has care needs that are unique. Engaging a caregiver for your loved one not only encourages interaction; it also helps build a strong emotional support for your loved one.

To give your loved one the best care he/she deserves, we provide a free care consultation for you and your loved one, to ensure that they get a Care Professional that best suits their needs.

Be Aware of Behavioural Changes

Gradually, as dementia progresses, there will be frequent – and sometimes, unexpected – changes in people with dementia. This is not a deliberate attempt to be aggressive or rude; there are usually triggers that stem from various factors. It may be insecurity from doing something new and unfamiliar, or it could be an environmental factor that makes them uneasy, or perhaps an underlying condition.

The best course of action is to remain patient. Getting angry with them will only exacerbate the situation and lead to frustration for you and the person. Ask questions politely and find out what is bothering them. Sincerity and kindness will lead to positive results, and a way to find out what can be done to help them calm down and be at ease. They can still read nonverbal cues and even imitate or mirror them. Staying calm and composed should help to defuse tensions.

Be tactful when you approach them if they are feeling agitated, irritable or anxious. Ask them what’s wrong and hear them out. Find a way to comfort them to put them at ease again. Keep it short and simple so they understand that you are helping them.

If you feel it helps, keep track of their behavioural changes with a journal. Take note of their frequency of changes, the intensity of behaviours, and even the time of day. You may be able to uncover the triggers that cause their behavioural change. If you are unsure, consult your doctor with your observations and get their recommendations.

Communicate

Communication is a crucial component in providing care for persons with dementia. Whether you are close to them or otherwise, communicating is important to ensure they are getting the adequate care they need and avoid unnecessary conflict caused by poor communication or understanding on their part.

Keep sentences short and simple, and speak slowly, so they can understand what you are trying to tell them. Maintain eye contact with them while speaking. Do not rush them to respond; give them time and space to think. Gently guide them along if it helps reassure them, or if they have difficulty deciding, but try not to interrupt them when they speak.

Try not to present too many choices that can confuse them. For example, ask them if they would like to have sushi or noodles for dinner. You can use visual cues to help them make a choice as well so that they can identify what you are asking about and help them make a decision.

If they feel uncomfortable about something, gently ask them relevant questions and see how you can remedy the situation for them. Observe their body language for clues as to what might make them feel this way. Be empathetic with their needs and feelings. Be open with them at all times with sincerity and goodwill, and they will find it easy to trust you.

Have Consistent Routines

It may pay off to set consistent routines for each day. Behaviours tend to worsen as the day winds on, and it can be taxing on you as a caregiver. As an example, you can establish rituals before bedtime to help calm them before they go to bed: you could consider reading them a story. Eliminate distractions that could irritate them, such as the television or radio.

Your planned routines should be full of activities that you and the person with dementia can do together, such as painting, watching a cartoon, exercising or crocheting. Exercise is not only good to keep them active, but is known to help improve sleep as well. Be mindful of naps in the latter part of the day; try to set a limit to naps and ensure they get sufficient amounts of sleep. Schedule physically demanding activities for the morning and afternoon to avoid instances of sundown syndrome, which is characterised by sadness, agitation, fear, delusions and hallucinations that occur in the late afternoon, evening and at night.

Be sure to avoid giving them stimulants like alcohol or coffee that could disrupt routines or negatively affect their mood.

Do Things With Them

It is unavoidable when a person with dementia begins to forget how to do simple things like brushing their teeth or making a simple breakfast. Some of these activities can end up becoming a frightening or frustrating experience for them. Doing things together with them will be helpful in setting up a routine that they can follow, while also giving the both of you meaningful engagement together that can provide comfort and connection.

It is important that you allow them enough time to complete activities; rushing them may only frustrate them even further. Make use of visual cues to help them learn the process, and be around to guide them if they need it. Allow them to do as much as possible, where you can. Encourage them along the way and celebrate small successes to build up their confidence. If there is still some lingering resentment or frustration, try to find out what might be the cause.

You do not have to think of new activities to do, as regular activities are sufficient. Painting, setting up the table for dinner, taking walks: these are all things you can spend time doing together. Activities will help reduce the risk of wandering or agitation, keeping them busy and interacting with you, close friends and family members.

Be Flexible

Where dementia is concerned, it can mean substantial changes that happen when you least expect it. Anything goes, as they say.

This should not mean that you must be vigilant at all times because that will quickly become a very exhausting, disorienting experience for yourself. Just be aware that circumstances can quickly change from good to bad without you realizing it. Even the best-laid plans can be undone by sheer chance.

You need to be able to adapt to changing situations when they crop up. Maybe there is an appointment with the doctor scheduled for tomorrow, but you get a call saying that the doctor will have to attend to something and needs to reschedule. Consider alternative dates for a future appointment that would be good for them and for the person with dementia. Take note of factors that could also lead to unexpected changes, and accommodate them as best as you can. Most importantly, tell the person you are caring for about the change, preferably before you make a decision. That way, you can gauge their response and decide on whether it would be suitable, or if another date and time is a better option.

Have contingencies in place for unexpected developments so that you won’t be caught completely off guard.

Safety First

The safety of the person with dementia must be put at a high priority. By creating a safe environment for them, you reduce a great deal of stress from potentially dangerous situations. Dementia impairs judgment and thus leads to a higher risk of injury. They could possibly trip and fall, or they may even find themselves wandering out of the house and find themselves lost.

For starters, install security measures to keep a close eye on their movement. It could be a tag with their personal particulars and your contact number, in case they wander from the house or have security cameras installed. You may even consider installing automatic shut-off switches to prevent dangerous conditions from occurring, like a fire from breaking out in the kitchen. Also, be sure to secure all doorways and other passages so they do not inexplicably leave the house without your knowledge.

Keep all dangerous items, like knives, dishwashing liquid or matches, in locked containers or away from their reach so they do not endanger themselves or others. Make sure to remove any walking hazards on the floor that could cause them to fall, such as throw rugs or loose papers. Ensure that there is sufficient lighting as well, so they can clearly see where they are going. You should also keep an eye on them for specific situations, like bath time or when they need to use the toilet.

Be sure to double-check the measures you take, just to be safe.

Tips for New Caregivers

If you are new to providing care for someone with dementia, the first steps of your journey will no doubt be a challenge. In times where you are in doubt, you must remember that it is dementia that is causing these changes. If they used to be a cheerful, friendly individual, they may wrongly believe that you have ulterior motives and treat you unkindly. In the later stages of dementia, they may become unable to participate in various activities, from dressing up to using the washroom, on their own. This will require a lot of patience, empathy and understanding to help them through the hard times.

For all the challenges you will go through, caregiving for someone with dementia does have its share of rewarding moments as well.

  • It is the purest expression of love for the person
  • It can change your perspectives on life and what it means to be human
  • It teaches you and others the lesson of compassion and selflessness

It is important to accept the diagnosis and do as much as you can to help them achieve some semblance of normalcy. Consult your doctor for do’s and don’ts when caring for a person with dementia. Look up various resources like this one on what you can do to help manage their dementia. Seek help from others if it helps. Be prepared for the bumpy road ahead.

Keep a positive mindset at all times to stave off the worse days, but do not force this positivity on yourself. If you know you need help, or if you need someone to express your emotions to, do so. You should not put your physical or mental health in jeopardy when caring for someone else.

Taking Care of Yourself

With the stress of providing daily care to someone who is unable to do so, there will be days when you find yourself at your lowest. It may even begin to accumulate. If you were to continue like this, you may find yourself becoming easily angered by small things, and an argument is bound to happen. If you also find yourself feeling increasingly anxious or fearful, or neglect your own work or personal needs, it may be a sign that you are going through caregiver burnout.

Studies have shown that the effects of caregiving in the long term can lead to a significant deterioration of your health if you do not take care of yourself.

If you find yourself overwhelmed, talk to other family members or close friends and talk about how you feel. Be open and honest about what you are going through. Discuss a plan to share the burden to care for them, so that you do not burn out so quickly. Communication is essential to provide adequate care and allow all involved parties to find ways to help one another. It can be a boon to improving your relationships with these people and vice versa.

You can also join a support group. Being in a support group can be beneficial in not only finding others in a similar situation as yours, but the shared experience of caregiving is a strong motivator to connect and share your troubles with them, and vice versa. You may gain useful insights into activities you can do, ways you can manage your mental health, or swap stories of caregiving. One support group, you can join is the National Alzheimer’s Caregivers Network, through the Alzheimer’s Disease Foundation Malaysia.

Balancing Life, Work and Caregiving

An additional challenge presents itself for caregivers who are juggling their work and caregiving duties. It can be a great source of stress having to find a balance between your personal life, your work life, and your caregiving responsibilities.

A starting point would be to organize your calendar and get help from family and friends, where possible, as discussed earlier. Burden sharing can be very helpful to allow you to work while someone takes over for you. Keep your work to work hours only, and do not make it a habit to bring work home back with you, as it will negatively impact the caregiving process. Be sure to tell them that your work is still important and that you can get it done without being impeded by your caregiving responsibilities. Work out a plan with their suggestions, but do know when to draw the line, if need be.

You should also find out if your company provides benefits for cases where you need to care for someone else. This could either be in the form of flexible work hours, or working from home on certain days, or assistance programs that may include community services to help you out. Speak with your manager or with human resources to see if some mutually beneficial arrangement can be made. Have a backup plan ready as well if an emergency occurs, so that a colleague can cover for you once you leave.

Getting Professional Help

If need be, consider opting for respite care to help you care for them and give you time for yourself. There is nothing wrong with getting help from time to time. Respite care gives you short-term care for the person with dementia while you attend to your business, whether it is work or personal time to relax and recharge.

Hospis Malaysia also provides avenues for care for dementia and a useful carer’s guidebook that informs you of useful advice to provide quality home care for patients.

Remember that you are not alone in your journey as a caregiver. Getting help will be helpful to ease your troubles and ensure your loved one gets the care they deserve.

Looking for someone to care for your loved ones?

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About the Writer
Calvyn Ee
Calvyn is an aspiring author, poet and storyteller. He spends his time reading, gaming and building stories with his action figure photography.
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