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Dementia Action Week (2021)

Dementia Action Week 2021

Cannock Soroptimists supported Dementia Action Week, 17th – 23rd May 2021, by featuring real life stories from those who care for people with Dementia. Some give their story as a family carer: wife or daughter, others are talking about their caring role within a professional setting. All are extremely powerful, written from the heart and Soroptimists are grateful to all participants for having the courage to write about such personal and emotive matters.

If after reading these you need to speak with someone please call the Alzheimer’s Society on 0333 150 3456

What relation to you was the person with dementia?

I have had experience supporting people with dementia in both a professional and personal capacity. 

It is important to note that Dementia is not a disease in and of itself, but rather an umbrella term to describe symptoms of diseases such as Alzheimer’s, Vascular Dementia, Dementia with Lewy body and fronto-temporal dementia.

How often did you have contact with him/her and how long did the situation continue/have you been handling the situation?

In a professional role I have had the pleasure of working with people with dementia every shift/daily (And will do soon when we start admitting residents – I cannot wait!)

What support or strategies have helped you or the person with dementia the most?

It is imperative to remember though the person may have dementia, this does not define them.  Having a care need may mean some adaptations may be required to empower a person to live the life they wish. That person however still has their hopes, ambitions, interests, experiences, family ties and personality to name but a few things which encompass being a person/human.

Thinking about the person not the disease, what helped them connect with who they are/were? (e.g. music, photographs etc)

I have had many friends and family visiting residents with dementia (obviously prior to COVID-19), coming to me afterwards exclaiming they feel spending time with their loved one is no longer feeling worthwhile, as the resident cannot remember the visit or, had forgotten the visitor’s name.

I implore every family member, every friend to keep visiting/contacting their loved ones with dementia.

Dementia effects everybody differently, but the bookcase analogy can be used to explain how it can affect different areas of the brain.

Imagine a bookcase, the books at the bottom contain the memories and facts retained by someone during their childhood, and as you go up the bookcase, the memories become from your 20’s, 30’s and so on until at the top of the bookcase are the person’s most recent memories.

This bookcase represents the hippocampus, and unfortunately it is not very resistant to dementia, imagine dementia rocking this bookcase, naturally the books at the top, would be the first to fall, and this represents someone’s most recent memories, such as what they had for breakfast.  However, the books lower down of the bookcase stay in place for longer, and this is why you may find someone with dementia’s memories may regress, for example they may be remembering events and facts from their 20s or 30s as if they were their most recent memories.

In contrast to this, imagine another bookcase but this one is sturdier, made of oak.  This bookcase is full of someone’s feelings and emotions.  This bookcase represents the amygdala.

This bookcase is far more resistant to dementia so when someone is happy, they may forget the reason or events that made them happy, but the happiness remains.

This is why it is so important for loved ones to still enjoy contact with people who have dementia, you may take them on a day out to the beach, enjoy an ice cream and have a laugh together. On the way home, the person may forget the events of the day, but that feeling of warmth, happiness and being valued remains.

Once relatives and friends become aware of this, it often changes their attitude towards visiting someone with dementia, to a far more positive experience.

What are some of your most memorable moments?

I have had the pleasure of working with many people with dementia, and the memorable moments are plentiful!

One in particular that has stuck with me, is a lady I helped support, who had fairly advanced dementia, but she stood out as her speech was limited, but on occasion she would shout letters out across the room.  Her spelling was accurate, and although the letters spelt out random words, they were often words that people would associate with someone articulate using.

It was not until her son came to visit, that some of this began to make sense.  Her son explained that his mom had worked as a head typist for years, and if anybody had any trouble spelling, what they were typing she was well known of being helpful and shouting the correct spelling across the room.

This became all the more endearing when her son, had a photo of his dad, on his parent’s wedding day, enlarged onto a cushion. On viewing the cushion the lady loudly called out ‘L.O.V.E’ and on that, there was not a dry eye in the house!

Looking back, what do you wish you had known before the person was diagnosed with dementia?

This is really difficult, for anybody who is dealing with dementia on a personal level, I have experienced a close relative have dementia, and even though I had worked with dementia professionally, I struggled to adapt this into a personal setting.  Knowing someone prior to the onset of dementia and seeing their cognitive ability decline can be heart breaking.  I felt comfort in the knowledge that even though my relative had dementia, there were moments of clarity, and behind the symptoms they were still there.

It is also important to accept someone with dementia’s reality (if safe to do so), though it may not be ‘accurate’, there is little reason to upset a person with dementia, as their reality is true to them, and though they may forget the facts of the conversation trying to convince them otherwise, the negative feelings will remain. 

Trying to adapt an environment to someone’s reality will often be of benefit.  For example, if they believe that their kettle if one for a hob and not acknowledged it is an electric kettle, replacing the electric kettle with a whistling one, would be a way of promoting independence.

What advice would you offer to someone who has a friend or relative diagnosed with dementia regarding how they move forward?

Just because someone has a diagnosis, does not make them any less of a person.  People with dementia can and do live very fulfilling lives. A care need does not define someone, they still have the likes, dislikes, ambitions, interests and social requirements.

Is there anything else you would like to record here as your experience with a person diagnosed with Dementia?

I am always surprised by family of recently admitted residents.  They often inform the care team that they don’t know how they do it.  That they are in awe of how the care team meets their loved ones needs.

Let me inform you.  The care team is in awe of you, the family member who has dedicated themselves in supporting someone with dementia.  As a carer we have allotted breaks and though we work long shifts, we go home, and can ‘switch off’ knowing there are colleagues supporting our residents.

Family members supporting someone with dementia often do not have these luxuries, and are often supporting a family member 24/7.  You have my absolute respect.

It is important for family members to acknowledge they also need to invest in self-care, I know devotion for your loved one drives you to commit all your time to empower them. Please find time to take a step back, we are more effective at supporting people when we are refreshed/supported ourselves.  Please do not feel guilty in arranging some ‘you’ time, in order to recharge.  Could this ‘you’ time be obtained by gaining the help of other family members to support, or would your loved one enjoy respite within a care home, where they can enjoy activities and socialising with people in a similar situation.