Dementia is a condition which the Caribbean, African, Asian, and Chinese communities are having some difficulty understanding because it is not a physical condition that you can see.

To give a simple explanation, it can be described as a medical condition where the brain is dying and a mental condition which presents with personality changes. The physical body also deteriorates as the brain forgets how to function and sometimes at some stage, they are unable to eat or swallow. The gravity of this condition destroys the carers as they watch their loved one, change and disappear before their eyes.

Most of the focus is placed on the person with Dementia within the health and social care system. There needs to be a dual approach for us to reduce the medical, physical, mental, and emotional impact on the carers. The carers are suffering too, because they are not prepared for the change that occurs with their loved ones as the disease progresses with time. The carers watch their loved one change before their eyes, and some are not emotionally prepared or know how to manage this condition.

In Bristol, research was carried out in three communities; Caribbean, Chinese and South Asian to capture the carers’ perspective which was published and launched in February 2017 at City Hall, Bristol.

Please see the report titled The Dementia Experiences of People from Caribbean, Chinese and South Asian Communities in Bristol. This research was initiated by Rosa Hui MBE DL - Director, Bristol & Avon Chinese Women Group.

In these communities both culturally and traditionally, it is viewed as an obligation to take care of loved ones and most carers suffer in silence as they manage the best they can do. It is difficult to witness the changes in personality which varies with everyone.

Some people with dementia can act aggressively and abusively, some lose all their inhibitions, some become childlike, and others develop a new persona. There is an old saying, “Once a man, twice a child” to bring this statement into this era it should read, “Once an Adult, Twice a Child”.

Sharron, one of our service users stated her mother repeated this saying to her many times while growing up and it was only when her mother suffered with Dementia that this statement became a reality for her.

Carers may not realise that they are grieving with the loss that is occurring before them each day. The emotional impact of this is never truly realised because we think of grief only when the physical death occurs.

The lifestyle of the carer changes to match that of the person with Dementia and in some instances, some give up work entirely to care for their loved one. While others may not be able to do so, they plan their work life around the person with Dementia. These changes are subtle and gradual that most carers do not see what they have shifted from their lives to be able to accommodate their caring role.

During a conversation with a wife, I had to help her understand the difference between her role as a wife and that of the carer for her husband. I helped her identify the roles which she carried out that she would not have done if her husband were well. Then the light bulb came on. I also asked, “What time did they have together as husband and wife?” Her first reaction was that she is busy making sure that he is safe and that she did not realise they did not have time together.

Another aspect the wife spoke about was the arguments due to the husband's lack of memory. She viewed it as him being difficult and not wanting to hear her side. I explained to her that his brain could not recall the memory about this issue in question therefore he could not respond appropriately. I described it to her as him being in a bubble when she raised the issue and whatever she was saying at that moment was just bouncing on the outside of the bubble. Therefore, she would have to let go of the issue and by doing so she would reduce her stress level. She breathed a sigh of relief and said that she wished someone had explained it to her before which would have reduced the arguments she had with him.

Sharron shared her explanation of Dementia to a friend when he described his mother as stubborn or unwilling to do what they asked of her. She asked him, “If you had a broken arm would you like someone to force you to use it?” His answer was, “No.” Sharron then said to him, “Then why do you expect your mother to respond to your requests when her brain is broken.” Her friend said, “Now I understand, and will share this with my siblings.”

Sharron described her experience of caring for her mother with Dementia until she died, as ‘getting to know a new person’. Her mother sang and talked about things from her past. Sharron also said it was difficult watching the lady she knew disappear as she learned more about the new person who presented to her. Sharron had to rely on her patience, ability to remain calm, using a soft tone of voice to respond, not correcting what was said but just acknowledging and maintaining positive and joyous energy around her mother. These are the skills she was able to identify that helped her to enjoy the time with her mother at home and when she had to be placed in a care home.

Those of us who surround the Carers are not conscious of this turmoil they are experiencing. There is the guilt and shame they feel as they see their loved one not functioning as they did before. Some carers think they are protecting their loved one by not letting others know about the Dementia. Some literally isolate the person and themselves so they do not have to explain the condition.

Depending on how the personality changes some are embarrassed because they do not know what their loved one might say or how many times, they may say the same sentence or possibly present themselves inappropriately. The carer most times tries to correct the person with Dementia but unfortunately, the brain does not understand the correction and they repeat the same story.

Frustration, anger, impatience, and other feelings are experienced by the carer and they sometimes feel the person is deliberately acting that way. Some carers will tell you that was not the character of their loved one or they may also say the person's stubbornness has increased with the Dementia.

Family and friends should give attention to the carer and ask how they are, or even give them some time out to take care of themselves. A simple act is to offer to sit with the person with Dementia for a few hours so that the carer can sleep or go out can have a huge impact on their mental wellbeing. Remember a little time goes a long way to improve mental wellbeing when shared.

Some carers have identified that they have received some form of information, mostly leaflets but that did not prepare them for what was going to happen. They also need to have someone to discuss with them and their loved one the effect of Dementia to help them understand what changes can or may occur.

We all would love to care for our loved ones at home or in their own homes but sometimes this is not possible due to the level of care required which may be twenty-four hours for seven days a week.

This is intense and will be both physically and emotionally draining for one person to give constantly. Helping the carer to be able to identify this crucial point will help to reduce stress, anxiety, and guilt when this decision for their loved one to be admitted to a care home must be made.

People who are not living with a carer and their loved-one should be aware that their positive or negative comments have a great impact on the carer. Talk with the carer to know what is happening for them so that you can offer support where needed.

Dementia is a destroyer of lives for the person who is diagnosed with it, the carer, the family, and friends. Sadly, it is one that is not reversible, the person slips in and out until they are no longer there. So, I suggest to everyone to make new memories each day because the person will not remember the one you made yesterday.

By Anndeloris Chacon RN