Five steps from diagnosis

STEP ONE: Self-preservation

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The first thing you must do is take care of yourself. You have to take a pragmatic view of the situation and take away any guilt that you may have.

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There is no job that would expect you to work 24/7 it is impossible to maintain that level of care with just you.

Continue with your life as much as possible (social events, hairdressers/Barbours, hobbies)

Make it a priority to have one day off a week and at least one night off as well. Make provisions to take a weekend off or a week where you can go away and do your own thing at least every six weeks.

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How is this achievable you may ask?

Make a rota for yourself for time off and what cover you need to put in place to allow you time off.

Ask family and friends to participate in the rota where they can allocate a set time and day to give you some time off or space to do something for you on a regular basis.

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You can get overnight or daytime paid carers to cover some time off which can be added to your rota.

Local care homes now offer rest bite for a day, weekend or week. It is beneficial to put this in place early on as when the time comes that YLO’s care needs are greater than you can offer it means that you have already sourced a home and the transition will not be so unfamiliar to your YLO.

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Check out what is available in your area as regards day centres, dementia cafes or other organisations offering a morning, afternoon or day where your loved one can attend to give you small pieces of time off for shopping etc.

You may find it beneficial to start to sleep in separate bedrooms to ensure you get as much rest as possible.

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STEP TWO: Making your home dementia friendly

Making your home dementia friendly right at the start of your journey will make life easier for both you and YLO.

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Some of the things you are going to put in place may not be needed for your YLO at this moment in time but if they are in place at the beginning of your journey it will make life easier for both.

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Go through each room one at a time:

Look at flooring and walkways throughout your home, make sure they are clear of obstructions, well-lit and avoid rugs.

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There may be a time to remove mirrors or cover them as it will cause distress as YLO may not recognise themselves in it.

 

It is a good idea to have censored little strip lights from the bedroom to the bathroom along the edge of the floor or skirting boards  (you can get off Amazon) this helps if they get up in the middle of the night to go to the bathroom.

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The bedroom – declutter draws and wardrobes and only have a choice of 3 to 4 outfits or items of clothing in each – this eliminates being overwhelmed to making a decision but giving choice at the same time.

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If YLO is a lady only have about 4 items of make up out on top of a dresser rather than in a draw so they are visible, with any other item they will use to get dressed i.e.: hairbrush

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The Bathroom – only have out what YLO will need in order to get washed or showered. Have it so that they can see it and display in the order that they would use it. 

Remove any rugs on the floor at some stage they will struggle with different floorings a rug to YLO may look like a whole to them.

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The Kitchen – Clear all the work tops and only have visible what YLO would need out – Coffee, tea and sugar have in clear vessels so they can see what is in them and have near the kettle in the order of making a cup of tea. The same with biscuits have in a clear vessel.

 

If YLO is living independently away from you and you are concerned they are going to set the kitchen on fire, you can disconnect the oven to alleviate that worry and have pre prepared meals in the fridge to go in a microwave.

 

The Lounge – Where they sit have a table at the side for drinks and newspaper/book again not much choice.

Remote controls for the TV if they are struggling with the buttons, you can get one with larger buttons or tape over the buttons they don’t need to use and only have the available buttons showing.

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STEP THREE: Routine

Routine is the key to making your journey looking after YLO more manageable for the both of you.

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Try to keep mealtimes, bedtimes at night and the morning the same time. As with the routine of going to bed getting washed and showered or bathed.

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Incorporate activities that are meaningful and purposeful  each day (I have some tools that will help you with this) activities should be short sharp and sweet lasting no more than 15 minutes morning and afternoon it’s important to keep the brain active for YLO.

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Incorporate moderate exercise everyday to help with balance, core stability and wellbeing. These should include walking, swimming and muscle strength exercises.

It is important to keep joints and motor skills active.

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Continue any hobbies and interests as long as possible with YLO dementia does not mean everything has to stop you may have to adapt to suit their needs and abilities.

 

STEP FOUR: Understanding the symptoms of dementia and the effect it has.

It depends on the type of dementia as this is the umbrella word for different types of dementia (which I will explain later)

YLO is diagnosed with dementia and some of these symptoms you may already be experiencing.

Some of the symptoms may not occur with YLO or they may not be experiencing it yet.

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Symptom 1: Memory loss – The brain is the engine of our bodies and with dementia it becomes broken so it is not working as it should. Our brain controls everything.

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To simplify this symptom, as it is a big subject I will split it into 3 elements to understand the thinking process.

Long term memory- this is a person past, things that they have lived through this is usually the last to be effected. They can engage in conversation well if you are talking about things they did years ago.

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Short term memory- This is a person’s present, things that are happening now, a few hours ago or a day or two ago. This is where most dementia people struggle with.

Automatic memory – This is things that the brain stores or acts upon without a thought process, for example if you fall over, you will automatically put your hands out to break the fall, or you may experience YLO has speech difficulties but when some music comes on they are singing word for word the song this is automatic response.

The automatic memory loss can affect their motor skills and remembering the sequence of certain tasks like making a cup of tea or getting dressed.

Knowing how the brain is affected as above helps with communication and how to help YLO doing tasks.

 

Symptom 2: Eye sight – A person living with dementia may be affected with their eye sight, it is not that they can not see it is what the brain is telling them what they are seeing.

They may struggle with the following:

Perception (when they are going to grab their cup of tea their hand is missing the cup)

Floor coverings when they are on a carpet moving onto a tiled or wooden floor they will struggle as the brain is unsure if it is a step down or if it is solid or not, or if it is a small rug for example in front of the door they might think it is a hole.

Outside they may feel unsafe as the vastness is overwhelming and puddles look like holes and shadow of trees and houses are distorting what the brain is telling them what they are seeing.

They may not recognize their living room, they can see the room but the brain is not saying it is their living room (again you can use conversation to try and let them understand its theirs by talking about a item you bought or has a story to it that is in the room, this sometimes helps them connect that this is their living room)

Facial registration sometimes they may look at you and don’t know who you are, they can see a face but again the brain is not linking that it is your face, so you can chat and bring things up from the past that you have done which may help them connect that it is you.

 

Symptom 3: Hearing – this can affect someone living with dementia in many ways. You might think that they are going deaf but what is happening is they are trying to make sense of everything.

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The rule of thumb is they will hear the first 3 words and are trying to process those words and then act or respond to them and if you carry on talking it becomes white noise to them.

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It is important to understand how to communicate with YLO. Talk slowly 3 words at a time, take any unnecessary descriptive words or instructions out.

Background noise also is a problem for YLO if the TV is too loud or you’re trying to talk to them with the TV on, it is too much noise for them to decipher what is being said.

Social gathering may become an issue because of the noise of more than one voice talking.

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Symptom 4: Wandering – You may notice that YLO has started to walk about a lot and won’t sit for too long.

This can be due to many reasons. How they are feeling are they anxious, they are struggling to understand what is happening to them, are they afraid, are they expecting to be going somewhere and they can’t settle as they are trying to remember.

To help with this you can give them an activity to do or ask them to help you with something to take their mind off what they are feeling, deflecting their refocused on a task.

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Symptom 5: Sundowning – Is called this because of the time of day it is and how it affects YLO. It is the period of day when we go from day to night, this is usually anywhere from 4pm to 6pm. YLO may start wandering around and can not settle and is quite anxious and their behaviour may change. This is what they call sundowning.

 

This can be eased by following your routine by closing your curtains at a set time every evening before the in-between light (dusk) change all your lighting to yellow lights rather than white light. Have the TV turned down or play some relaxation music the same every night helps as YLO will recognise the music. This is the importance of having a routine.

 

Symptom 6: Aggressive Behaviour – This is a symptom that can be a part of the dementia, or it can be triggered by how YLO is feeling.

 

When a person with dementia is showing aggressive behaviour, it can be triggered in that they feel unsafe, scared, frustrated or they could be trying to communicate with you.

 

The way in which you communicate is key, your tone of voice is very important, try and keep it monotone or calm, if you are stressed, worried or even annoyed they can sense it in your tone and may react with aggressive behaviour because they know how you are feeling and they are trying there hardest to cope which is destressing them.

 

Never tell them that they are doing something wrong as this too can be a trigger, when you become a caregiver, you learn quickly that the way in which you communicate, what you can and cant say and your tone will all have an effect upon YLO.

 

If YLO is having an episode of aggressive behaviour walk away until you are strong enough emotionally to deal with it then go back with a fresh persona, usually by this time they may have calmed down.

 

As long as you and YLO are both safe that is the priority.

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STEP FIVE: What to expect

Dementia progresses through seven stages, from no cognitive decline to very severe impairment. Understanding these stages can help you identify where you are at with YLO living with dementia.

It involves a significant decline in cognitive abilities, including thinking, reasoning, and memory, which disrupts daily life.

Dementia progresses through the following stages:

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STAGE 1: No cognitive decline

At this stage, the person can function normally and exhibits no signs of memory loss, confusion, or cognitive impairment. They are free of symptoms and don't appear to have any signs of cognitive decline.

However, the structure and functioning of their brain may have started to deteriorate as nerve cells begin to lose connections with other brain cells and die. YLO has probably gone through this stage without you noticing, they get good at masking the signs.

 

STAGE 2: Very mild cognitive decline

The person starts to experience occasional lapses of memory such as:

• Forgetting where they keep familiar everyday objects

• Forgetting names they once knew very well

At this stage, the symptoms are unlikely to affect the person’s work or social interactions. It isn't uncommon for people over the age of 65 to experience some cognitive difficulties, and some decline in abilities is a normal sign of aging. But it may also be a sign of the second stage of dementia.

In fact, the symptoms may even be too mild to detect in a clinical interview with a healthcare provider, as the person may be able to adequately perform memory tests during the interview. Again YLO will be good at masking what is happening and think that they are fine.

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STAGE 3 :Mild cognitive decline

This is the stage at which cognitive impairment becomes more noticeable to the patient, their friends, family members, and colleagues.

The person may start to show symptoms such as:

• Getting lost while walking or driving, particularly in unfamiliar places

• Reading something and retaining very little of it

• Forgetting the names of people they’ve just met

• Losing items of importance or value

• Having trouble concentrating and performing complex tasks

• Experiencing increasing difficulty in social settings

• Frequently forgetting words and the names of loved ones

• Performing poorly at work to the extent that it becomes evident to colleagues

The person may start to feel anxious as their symptoms begin to become apparent and interfere with their ability to function. 

It is usually at this stage you have started to notice things are amiss and make an appointment to see the doctor with YLO

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STAGE 4: Moderate cognitive decline

In this stage, the person will exhibit a clear decline in cognitive function during a clinical interview.

Some of the symptoms of this stage may include:

• Lack of knowledge of current and recent events

• Difficulty remembering parts of their own personal history

• Trouble with organizing, planning, traveling, and managing finances

At this stage, the person will likely still be able to recognize loved ones’ names and faces and navigate familiar places. However, they may start to avoid challenging situations to prevent anxiety and hide their distress from others.

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STAGE 5: Moderately severe cognitive decline

From this stage onward, the person may no longer be able to function without some assistance. 

These are some of the symptoms of this stage:

• Difficulty recalling a vital detail, such as their address, phone number, or high school

• Disorientation in terms of place and time, such as confusion regarding the season, date, day of the week, or time of day

• Difficulty counting backward from 20 by 2s or from 40s by 4s (provided they are educated and were once able to do this calculation)

• Trouble with making decisions

In this stage, the person can likely still remember their own name and the names of their spouse and children but may struggle to recall their grandchildren's names.

They may be able to eat and use the bathroom without

assistance, but may need help with tasks such as deciding what to wear.

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STAGE 6: Severe cognitive decline

At this stage, the person may require a high degree of care, as they may have symptoms such as:

• Difficulty remembering the names of their spouse, children, or primary caregivers

• Lack of awareness regarding all the recent events and experiences in their life

• Patchy or skewed recollection of their early life

• Difficulty counting backward or forward to 10

• Lack of awareness regarding their surroundings, as well as the time and place

• Inability to travel alone without assistance

• Tendency to wander

The person is also likely to experience emotional and personality changes, such as:

• Paranoia, hallucinations, and delusional behaviour such as talking to themselves or believing their caregivers are trying to harm them

• Obsessive symptoms, such as repeatedly performing cleaning activities

• Agitation, anxiety, and even violent behaviour

• Loss of willpower due to being unable to carry a thought long enough to complete the action

During this stage, the person is likely to still remember their name and distinguish between familiar and unfamiliar people in their environment. They will probably need assistance with daily living activities and may experience incontinence and sleep-related difficulties.

 

STAGE 7: Very severe cognitive decline

In the final stage, the brain appears to lose its connection to the body and becomes incapable of telling it what to do.

The person is likely to progressively lose their motor skills and the ability to speak. They may only be able to utter unintelligible sounds or words, if at all. They will need assistance with all personal care tasks, such as eating, walking, and using the bathroom.

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