Caring for & Living with Dementia: Tips & Resources

S.M.I.L.E – 5 Tips When Caring For Your Loved Ones With Dementia

In the month September, I was fortunate to be one of the volunteers to accompany about 15 seniors with dementia for their National Museum tour together with a few of their loved ones. While spending time with them, I observed that most of them had some form of insecurities about life (just like most of us), and showed signs of anxiety from time to time reflecting very different needs. These needs range from the need to be accepted by others around to the need to feel secured – to go home to their loved ones at the end of the day. Most of them cope with such needs by resisting / rejecting unfamiliarity in their lives and/or behaving in a repetitive manner, at times even aggression. A smile is one of the best ways to reassure them, make them feel accepted and secured, and alley their anxieties.

 

A smile is an effective form of reassurance to people living with dementia. As they start to lose their vocabularies and words, their language capability, they tend to be highly visual. A smile indicates to them that we are nice and friendly people who care about them and we accept them as they are. It also indicates that we are not unhappy or upset with them and create a non-threatening nor intimidating atmosphere. This will greatly reduce or eliminate their anxieties and insecurities when interacting with us. The September trip was my first time meeting this group of seniors and spending time with them. We know that a sense of familiarity is important to persons with dementia, including familiar environment and familiar faces. To make them feel comfortable with me, I readily offered my smile while maintaining eye contact, and soon I had in return many wide sunny grins and smiles. Their grins and smiles gave me this nice and warm feeling despite the gloomy and rainy morning. A smile, dementia or not, in general relaxes people and lowers their suspicions and defense mechanism towards one. Before long, we were chatting around the table where I was seated, enabling me to understand each of them better.

 

As I reflected on my experience and interactions with these seniors during the trip in September, I was inspired by them to create and share S.M.I.L.E. with you so that they will smile more and so will you.

 

What does S.M.I.L.E. stand for?

Smile

 Maintain their dignity and self-esteem with mindfulness

   In-tune with their feelings

    Lessen their anxiety and sense of insecurity

     Eliminate perceived inequality and unfairness

 

Besides smiling, there are other ways to meet their needs for security and acceptance, hence, lessen their anxiety and sense of insecurity. For example, Aunty Emily, one of the seniors, highlighted that she did not know where the National Museum was located when we informed her about our trip to the National Museum after their morning tea break. She went on to enquire about how we would get to the museum to which I replied that we would be taking a bus there. Aunt Emily’s immediate response was that she did not want to go for the museum trip. One of the volunteers, Marie, overheard the conversation and tried to excite Aunty Emily by sharing with the latter about the exhibits at the museum. Aunty Emily repeated that she did not want to go. I asked Aunty Emily for her reason(s) for not wanting to go, to which she replied that she was not familiar with the location of the museum and would not know how to find her way back home after our visit. Marie replied that the centre had catered a bus to take us to and fro the museum. Aunty Emily refused again, sharing that she did not want to miss her evening transport home. In conclusion, we can see that Aunty Emily did not want to go on the museum trip as a result of her need to feel secured that she would be able to go back home to her family at the end of the day. She finally smiled and agreed to go for the museum outing when we reassured that we would be back at the centre by lunchtime, thus, she would not miss her usual evening transport. Aunty Emily’s anxiety was reduced through our patient explanations and reassurance.

 

Mindfully maintaining one’s dignity and self-esteem is another way to meet their need for acceptance and their need for security. Being diagnosed with dementia, very often than not, robs one of their dignity and self-esteem as concerned loved ones and healthcare workers start to take over the lives of the former, with the intent to help. They would start making decisions for the person with dementia without consulting the latter thinking that they know best now as the latter is confused and is slowly losing his/her mind. They usually also start to prevent or stop the person with dementia from doing activities that the latter used to perform independently on daily basis before the diagnosis such as going out alone, doing shopping and marketing, cooking, or even working. All such kind intentions actually do more harm to the person with dementia than to help them. They actually take away their sense of dignity and self-esteem, making the person with dementia sinks into learned helplessness, low self-confidence, low self-esteem, and at times anxiety disorder, eventually depression. In addition, loved ones may grow to be quick to jump to the conclusion and reprimand their loved ones with dementia, believing that the latter is at fault for inappropriate social behavior(s) due to dementia without first seeking clarification. At the end of that September museum trip, the Museum presented every senior and volunteer with a red souvenir goodie bag. We arrived at the centre at about 1.30pm, and the centre manager gathered the seniors at the dining table for a late lunch. Everyone was seated around the table, chatting and holding on to their red souvenir bag while waiting for their lunch to be served. I noticed this nice, friendly and chatty lady (let’s call her Aunty Sunshine) was seated without her souvenir bag when I handed my buddy, Aunt Mimi, her red souvenir bag. Aunty Sunshine had been chatting happily and smiling throughout the trip, but upon noticing that everyone around her was holding on to a red bag but herself, Aunty Sunshine suddenly dropped her smile. She asked me in Mandarin: “What is the red bag that everyone is holding on to?” She was concerned as she was different from her peers, everyone else had a red bag but herself. There appeared to be an obvious inequality at that moment, and we know that eliminating perceived inequality and unfairness is a definite way of reducing their insecurities and increasing their sense of being accepted. Not knowing what had happened to her souvenir bag, and eager to meet her need for security and acceptance, I readily offered mine to her in an attempt to eliminate her perceived inequality at that moment. As I handed her my souvenir bag, I said: “It’s a souvenir bag given by the museum, and here, this is yours.” Appearing pleasantly surprised, she asked: “I also have?” I told her that everyone who visited the museum has one and reassured her that that was hers, so she received the bag from me happily and continued chatting with her peers. Just then, her daughter walked towards us, asking Aunty Sunshine whose souvenir bag she was holding on to and reprimanded her for taking someone else’s while informing Aunty Sunshine that she had kept the latter’s souvenir bag. All this time while being reprimanded, Aunty Sunshine helplessly repeated the words “I did not (take someone else’s bag)”. At this instance, I jumped in and told her daughter that I had offered my souvenir bag to Aunty Sunshine upon seeing that she was without one. Only then, did her daughter stop the reprimand, turned and smiled at me thanking me for the bag. Yet she did not apologise to her mother for her misjudgment of the situation and the wrongful reprimand. I imagined myself being in Aunty Sunshine’s shoes and felt real bad for Aunty Sunshine. I felt bad about the ‘wrongful public reprimand’ which might have caused a sense of embarrassment in Aunty Sunshine, further eroding her already vulnerable self-esteem. I felt bad about the insensitivity of her daughter towards the former’s feelings. How would you have felt if you were Aunty Sunshine?

 

At work, we know that we should not reprimand our subordinates in public; these days, parents have been advised not to reprimand and embarrass their kids in front of their peers. What about our parent(s) with dementia? Let’s remind ourselves to take what we see and what we hear with a pinch of salt and give our loved ones with dementia the benefit of doubt. Rather than jumping in to reprimand them (at times, wrongfully) in public, gently clarify with them and with others around them, before deciding with mindfulness on what we should do with what we had saw or heard. These will help to maintain the dignity of our loved ones. Having said so, on the other hand, Aunty Sunshine’s daughter might have her valid reasons for jumping on her mother that I might not be aware of since there are always two sides to a coin. In any case, it’s always good to be in-tune with the feeling(s) of the person with dementia, avoid embarrassing them in public, investigate first and allow them to defend their actions or words, maintain their dignity and self-esteem, and if necessary privately remind them about their ‘misdeeds’ and work it out in private. Don’t wash their dirty linens in public, as most of us, if not all, don’t like to wash our dirty linens in public.

 

So my dear friends, remember S.M.I.L.E.

 

 

* The names of the characters in the examples quoted have been changed for privacy and confidentiality purposes.