How to speak to Children about Alzheimer’s disease

I have been speaking to children who have been affected by Alzheimer’s disease . They may be children of a loved one or they may be grandchildren.

The young people need to talk about their feelings as changes occur. These feelings may include:

•grief and sadness at what is happening to someone they love

•anxiety about what will happen to the person in the future

•fear, irritation or embarrassment

•boredom – due to hearing the same stories and questions over and over again

•a sense of loss if their relative doesn’t seem to be the same person that they were, or because it isn’t possible to communicate with them in the same way anymore

•anger or rejection if other family members are under pressure and seem to have less time for them than they had before.

Tips to help discuss the situation effectively.

•Explain the situation as clearly and calmly as possible.

•Make the point more clearly by giving practical examples of behaviour that might seem strange, such as the person with dementia forgetting where they are

•Focus on the things that the person can still do, as well as those that are becoming more difficult.

•Try to be patient. You may need to repeat your explanations on different occasions, depending on the age of the child or young person.

•Ask how the person’s illness makes the child feel. Listen carefully to what they have to say and try to imagine the situation from their point of view so that you can find out exactly what might be worrying them.

•Use humour. It often helps if you can laugh about the situation together.

It is time to speak to all about Alzheimer’s disease as we remember our loved ones for who they were before the disease

Alzheimer’s Disease is in Kenya … By Elizabeth Mutunga

As I create  awareness, I meet with lots of people and they tell me lots of things.  The other day I met with someone who asked what I was doing and I mentioned I am creating awareness about a disease called Alzheimer’s.  She looks at me and tells me ‘ my dear that disease is not in Kenya… that is a disease for the Western world’ .  Her sentiments were valid…  The first time I was told my father has Alzheimer’s disease I thought the same too.  The other day was in a church creating awareness and the same sentiments were repeated.

I need to inform my fellow Kenyans the disease is in Kenya.  Most of us do not understand what we are dealing with and truth be told by the time we seek help we have been frustrated, angry and at the point of despair.  The difference between us and the Western world is that there is a lot of awareness on the disease and when someone notices there is something wrong with their memory they will seek help immediately.  This is one of the reasons that makes me wake up each morning and go about talking to people and creating awareness.  Once there is awareness , there will be less stigma and we will have a community that is friendly to Alzheimer’s and Dementia in Kenya .

Every day I meet families that have been affected by the disease and when you invite them for the support group and they realise they are not alone..  this knowledge gives them hope to move on.. I long for the day these families will get help from the Government as the people who are usually affected are usually the bread winners of the family and thus the family does not have a source of income.  As they are still grappling with this devastating disease the primary caregiver will be a family member and thus there is no one able to go out and fend for the family thus most of them go through a financial crisis.

Lets keep talking create awareness, reduce stigma and to have a friendly dementia community…

Power of Sharing – Alzheimer’s Caregivers

Each day as I create awareness there are new lessons to learn. Yesterday I learnt about the power of sharing… Many times we think we are the only ones going through a difficult moment until we start sharing then we realise …wow there is someone else going through a greater challenge than we are and this teaches us to be grateful .

Sharing also helps us realise that we are not alone there are others we can lean on…. A shoulder to cry on moves you from a desperate situation to a position of ‘I can make it’…. What changed your perception? the power of sharing …..

Let us always lean on each other for support…

As Alzheimer’s disease caregivers let us learn to share our challenges so we can be heard to create the change we want to see.

Do you know anyone who needs uplifting due to the challenges of Alzheimer’s caregiving? We are here to help as we have been through it and we understand…

Have a hopeful day

The power of an Alzheimer’s Support group- The Kenyan story

Elizabeth Kasimu Mutunga’s Story

Alzheimer’s patients have issues with memory loss, thinking, recognition, language, planning and their personality deteriorates with time

Elizabeth Mutunga is one of the caregivers who was affected by the disease. She was among the initial group that started the support group. In 1992 after she had completed form four , the family realized that there was something wrong with our Dad. Dad had reached 65 years and he was sent on retirement. This is when we noticed there was something wrong.

By this time I was just 17 years and she had to go and fend for her family as her father was not on employment. I had to ensure that my siblings went to high school being the first born. My immediate follower was in form 2 and the last born sister was joining form one. By then Dad was suffering from Memory loss, had problems with planning and thinking difficulties. Therefore, trying to inform him that the last born needed to go to school did not make sense to him. As a family we did not understand that he was unwell as we had not heard of Alzheimer’s Disease before.

We tried to involve all the people we could namely:- relatives, friends, the church. Dad would convince them when they came to speak to him and inform him of what we had told them, he would counter our accusations and inform them how bad we were and they would believe him. He would tell them how we were disrespectful children. Since no one understood what we were going through we were so mad with all the people who would take sides with him.

When the family was informed about the disease I started looking for a support group as would be the norm when you are informed that your loved one has been diagnosed with a terminal disease. There were not groups on the net. This is when she realized that there was no support group and she started reaching out to people who would be of assistance to her to set up one

I have realised the power of a support group. Though I did not join one I started one …. There are times things happen to you so you can help others … I am glad now I am able to reach others to give them hope

Alzheimer’s caregivers – it is time to stand up and be counted.

The other day as I was going around speaking to caregivers who have loved ones affected by Alzheimer’s disease I posed a question … Do your neighbours know what your loved one is suffering from?, the church congregation, all family members? and the answer to all the questions was NO. So I asked why not… the response I got was that it is difficult to explain what our loved ones are suffering from and also we already have been labelled as a family that has someone who does not have a stable mind. In Kenya it is know that mental diseases are “most feared” and thus most families are hiding their loved ones either literally in their homes or by not giving information to people around them

Most of the caregivers have suffered from stigma and the only way the stigma can stop is by talking about what we are going through . For example when we take our loved ones to the hospitals do we inform the doctors or the nurses that our loved ones are suffering from Alzheimer’s? There is an advantage in letting people know what our loved ones are suffering from. We are able to get more people to rally behind our cause of educating the public and thus creating awareness about the disease. This will lead to a communities that are dementia friendly and people will be all around us ready to assist. we therefore must come out of our comfort zones and start speaking. The more we talk, the more people will be aware and the more will offer resources, time and the help that we require.

The other diseases that are given a priority in Kenya are having the media coverage and sponsors because someone dared to speak. Yes in the beginning you may be demonised by family and friends but it will be worth it. As one day we will look back and we will be glad that we spoke .

Alzheimer’s caregivers it is time we stood up to be counted.