Caring for your Dementia Loved One: Tips from Professional Nurses

Overview 

According to statistics, 1 in every 10 Singaporeans aged above 60 years old is affected by dementia. This is translated into approximately 82,000 people diagnosed with the condition in 2018, and this number is predicted to almost double to 152,000 by 2030. 

Contrary to what many believe, dementia is actually not a specific disease. As noted by the CDC, it is an umbrella term used to describe several conditions that affect one’s ability to remember, think, make decisions and interfere with undertaking everyday activities. The brain is progressively disabled as dementia worsens. 

The most common type of dementia in Singapore is vascular dementia – a type of dementia caused by damage to the blood vessels which consequently causes brain damage. Alzheimer’s disease is the second most common form. It is often used interchangeably with dementia by the public; however, Alzheimer’s is one of the most commonly diagnosed forms of dementia. Read about Alzheimer’s disease and other types of dementia in our expert interview with A/P Dr. Aaron Ang – Senior Consultant and Former Head of Department of Psychological Medicine, Tan Tock Seng Hospital here.

As the prevalence of dementia increases, more and more families and care homes are facing a need to care for a family member or patient affected by this condition. In this interview, we ask and share with you dementia care tips that experienced registered nurses at Ninkatec specialising in dementia care have gathered, from their collective tens of years caring for dementia patients in Singapore.

In their career, Ninkatec Nurse Team have come across patients in all stages of dementia, including mild, moderate cases and even patients in the advanced stage of Alzheimer’s or other forms of severe dementia, the majority of which are cared for in home settings. We hope the tips will provide helpful guidance and proven tactics for family members and caregivers who are taking care of a dementia loved one at home. 

1. Dementia patients do better in a familiar environment such as their homes

From observation, Ninkatec Nurses all believe that it is better to care for dementia patients at home because the familiar home environment can help them better manage their daily routines. This has also been proven by studies. According to a World Alzheimer Report provided by Alzheimer’s Disease International, “it is commonly stated that older people in general, and people with dementia in particular would prefer to be supported to remain in their own homes, for as long as possible.“ 

According to Ninkatec Nurses, there are several other reasons why dementia patients may want to be cared for at home. For one, it could be because they believe that they are doing ok and can independently care for themselves. They may refuse to go to a dementia centre. Being enrolled in a dementia care facility would be indicative of their inability to care for themselves. Therefore, when the patients express their wish to be cared for at home, the families are encouraged to respect their wishes if the situation allows. 

In caring for a dementia loved one at home, it is important to help the patients to come to terms and accept the fact that they are being affected by dementia and help in managing daily life is, or will eventually be needed. One of the Ninkatec Nurses explains that he attempts to build trust with patients and their families to help manoeuvre caring for a dementia patient, which is typically quite complex. 

Unfortunately, there are cases when family members do not have time or do not feel they have the skills and proper resources to provide dementia home care for their dementia-affected loved ones. In these cases, it is better to enrol them into a professional dementia day care centre or dementia nursing home.

2. Nursing care needs differ among dementia patients and dementia stages

If your loved one with dementia is being cared for at home by a caregiver, you may wonder whether nursing care from a professional nurse is necessary. The short answer is yes. However, the amount of nursing care intervention is dependent on the stage or level of dementia affecting the patient. As explained by Ninkatec Nurses, in mild and some moderate cases, the need for professional nursing care is not common. Non-professional dementia caregivers such as family helpers, are often able to provide adequate care and help for the patient to complete their daily living activities.

Conversely, in the moderate and advanced stages of dementia, patients will require frequent nursing care. Ninkatec Nurses explained that due to their condition, they may forget showering or toileting. Their balance is also quite poor, and their speech is often affected, preventing them from speaking in easy-to-comprehend sentences. Additionally, they may choke during eating, which makes it difficult for a caregiver, such as a non-medical family member, to provide the level of care required. Therefore, constant professional nursing care is needed. 

A 2017 journal article published by Annals of Geriatric Education and Medical Sciences examined the vital role of a nurse in caring for dementia patients. This article outlined other reasons why a professional nurse is best suited for providing care to dementia patients. It pointed out that the care provided by family members or informal dementia caregivers is possibly lacking in compassion and understanding, which compromises the standard of care. In the following parts of the article, Ninkatec Nurses share some useful tips to help dementia caregivers improve compassion when caring for a dementia-affected family member.

3. Dementia patients in Singapore need a number of common nursing procedures

The common nursing care needs or procedures that Ninkatec Nurses have administered for dementia patients include tube feeding, which is for patients who choke while eating or are unable to eat. Many patients may also require speech therapy. Bed-bound patients often develop pressure sores – also called pressure ulcers, which can develop from just redness to a bad wound in a matter of weeks. As such, wound care and pressure sore care is needed from professional nurses. 

Additionally, because dementia patients tend to have difficulty swallowing and are at risk for choking, administering medication is sometimes better performed by a nurse rather than a caregiver. Some dementia patients also require IV injections, especially those with chronic comorbidity. For more details on nursing procedures Ninkatec nursing team provide, please refer to our nursing care service list here.

4. It takes a lot of patience & empathy to interact with and handle dementia patients

It is common for a moderate to severe dementia patient to not follow instructions. One Ninkatec Nurse shared an example in which his patient insists that the medication given to him is poison; other times, he says the medication is not in the right colour, so it is not his medicine. 

Another patient silently ‘protests’ without caregivers and family members realising. She pretends to take the medication but keeps it in her mouth, and when no one is around, she spits it out. This is an example of why constant and careful monitoring of dementia patients is required, not just to check if they swallowed a medication, but also to monitor their vitals and other disease-specific measurements. 

The National Center for Biotechnology Information (NCBI) published an article that explains why dementia patients may not follow instructions. The author pointed out that in a particular study, impaired decision-making was found in 44–69% of residents in nursing homes, where almost every patient affected by mild-moderate Alzheimer’s disease displayed impaired decision-making. This article suggests that due to damage to brain structures, cognitive impairment arises and sometimes causes the patient to have difficulty following instructions and cooperating. 

Ninkatec Nurses remind dementia caregivers and family members to empathise with dementia patients. Due to communication challenges, dementia patients cannot always express what they want or how they feel. A ‘protest’ could simply be an expression of doubt and confusion from the patient.

Depending on their personality and the situation, especially if they feel threatened, some patients can become very aggressive to the point that they punch or bite. To deal with dementia aggression, the best response is to be very patient, wait for them to calm down, then talk to them. In the case of the patient insisting medication is poison above, Ninkatec Nurse managed to de-escalate the situation and persuade his patient to take the medication by calmly explaining and showing the prescription from the doctor, and searching the internet to show his patient how the medications look like.

5. It is crucial to learn to communicate with dementia patients clearly, simply, with respect and dignity

Being patient and treating a dementia-affected person with respect and dignity are key elements for making your interaction with the person successful. Although it may require a few attempts to get them to understand the information, do not belittle them or treat them as though they were kids.

It is essential to understand that everyone’s experience of dementia is different, and as such, not every tip may be applicable or beneficial to the person you are caring for. However, showing that you care and love them always helps. If you find yourself in a situation where you are rushing or unable to keep calm, it is best to leave communication for another time or to someone else, like a family member, a professional dementia caregiver or nurse. 

Communicating with dementia patients takes practice. Below are several approaches to handling communication with a person with dementia, as mentioned by The Alzheimer’s Society UK.

Before you communicate

  • Put yourself in the patient’s shoes. How would you feel if you had difficulty communicating, and what would help you?
  • Plan enough time to spend with the person. 
  • Make the environment accommodating for communication, for example, an area that is quiet and calm, with good lighting, is more ideal than one with a noisy, busy or distracting background.
  • Turn off TV, music or remove other distractions.

How to communicate

  • Position yourself where the person can see and hear you as clearly as possible.
  • Always speak to a person with dementia clearly and calmly.
  • Use short, simple sentences to talk to dementia patients.
  • Don’t talk to the person as you would to a child – be patient and have respect for them.

What to communicate

  • Ask one question or give one instruction at a time
  • Word your questions to facilitate a simple answer. For example, instead of asking, ‘What drink do you want?‘, facilitate decision making with, ‘Do you want coffee or tea?‘, then ‘Do you want it hot or cold?
  • To prevent frustration, avoid asking too many questions or asking complicated questions.

How to listen 

  • Listen carefully and offer verbal and non-verbal support. 
  • If the person has difficulty finding the right word or finishing a sentence, ask them to explain it in a different way. 
  • Pay attention to body language, as it can show a lot about their emotions.

The following do’s and don’ts in communicating with a dementia-affected person, compiled by Ninkatec Care Team, is useful to save to your phone or keep handy. 

How to Talk to Someone with Dementia – Ninkatec Dementia Care Tips

6. Understanding your dementia loved one’s personality makes ‘negotiation’ with them easier 

Almost all dementia caregivers have felt frustrated when a dementia loved one refuses to eat, or shower, or follow instructions that he previously agreed to do. It is important to go deeper than ‘because the brain is failing’ to find out what makes them dislike an activity. Then it is equally important to ascertain what motivates them to do something. 

Here is an example from one Ninkatec Nurse:

“A patient I provide dementia care for doesn’t want to shower, because he forgets about it. I also found out he loves to play card games. So, I play a card game with him and make it a rule that if he loses he has to shower. But because he easily forgets, I write down the rules on a board before we play. When he loses, I show him the written rule, he sees it and agrees to go shower.” 

Essentially, how to get a dementia-affected person to eat, drink, shower or carry out other daily tasks is dependent on the person’s character. Ninkatec Nurses advised that you “be patient to find out what they like to do, do it with them first, then gently ask them to do the activity. Keep them happy and in a good mood. If they are in a bad mood, wait for them to calm down.“

Takeaway message

Throughout our interview, Ninkatec Nurses emphasise empathy and love, regardless of whether you care for a dementia patient as a family member, or professional. “The most important thing is to be patient and try to understand your patient or loved one with dementia. The condition can cause them to act like someone else, but deep down they are still who they are, with their personalities and preferences. We have been able to build trust and bond with our patients and families, from strangers to someone who makes them light up and say ‘Luckily you are here.’ So, we believe with family members, the bond and trust can be so much stronger.” 

Outside home, Ninkatec Nurses remind all dementia caregivers to care for themselves while caring for the dementia loved one by tapping into the support system. “Anyone caring for someone with dementia, professionally or informally, knows how frustrating it can be. But you are not alone. There is help out there, professional help and social help such as Dementia Friendly Singapore or Samaritans of Singapore, to support you. Get the help you need to overcome the frustration, bad moods and other issues that arise. After all, remember that the person with dementia is still the one you care about and want to provide the best dementia care for.” 

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