CARING FOR A LOVED ONE IS THE GREATEST ACHIEVEMENT WE CAN DO. THOSE WHO WALKED BEFORE US HAVE GIVEN US SO MUCH AND MADE IT POSSIBLE FOR THE LIFE WE ALL ENJOY.
Here are some quick proven tips and good
advice for you to follow.
- Don’t ever argue – always agree.
- The person with dementia is not giving us a hard time – Dementia is giving the person a hard time.
- Don’t tell – ask.
- Encourage and Praise.
- Never ask “do you remember”.
- If stuck in the moment – redirect.
- Smile – even when unhappy.
- Never say – “I already told you or you’ve just done that”.
- Do with them – not to them (always include).
- Take care of yourself – take time out for yourself, join an online or local support group.
- Use every method of communication to reach your loved one – music, art, dance, and poetry etc.
- Touch is a massive part of communication – even a simple touch on their arm can show love.
- Be educated about the disease as much as possible, so you can understand and empathize with your loved one.
- Understand your own physical limitations to avoid a burnout.
- Give them independence whenever possible, (doing with– not to).
- Have in place set routines – to prevent confusion and frustration for them.
- Meet your loved one in the now, as that’s where they are, wherever that may be.
- Love, protect and cherish your loved one, treat with respect and full dignity whenever possible.
- We must get into the person with dementia’s reality, as it is impossible for them to get into ours.
- Speak slowly and very clearly without too many commands at once.
Sun – Downing is more common when the person is in mid-stages to advanced stage Dementia. Dementia can make it hard to function and remember new routines.
Your loved one might react to unfamiliar places and things with feelings of confusion, stress, and anger.
These feelings can play a large role in Sun – Downing.
Stick to the same routine every day to help your loved one feel calmer and at ease, try to avoid making changes to routines that work for you both.
If you need to make changes, try to adjust their routine gradually and as little as possible.
Your loved one might experience Sun – Downing as the result of changes in their body clock, their sleep-wake cycles. Adjusting the light in their home might help.
Consider placing a full fluorescent light about one meter away from your loved one for a couple of hours each morning.
In turn, fatigue is a common trigger of Sun – Downing, this can create a vicious cycle.
Too much daytime dozing and inactivity can make it harder for your loved one to fall asleep at bedtime.
To promote a good night’s sleep, help them stay active during the day. For example, go for a walk in the park together or clear some space for dancing.
This might help improve their sleep quality and reduce their Sun – Downing symptoms.
It can also help them enjoy better physical health.
Adjusting your loved one’s eating patterns may also help reduce their Sun – Downing symptoms.
Large meals can increase their agitation and may keep them up at night, especially if they consume caffeine or alcohol.
Encourage your loved one to avoid those substances or enjoy them at lunch rather than dinner.
Limiting their evening food intake to a hearty snack or light meal might help them feel more comfortable and rest easier at night.
Try to help your loved one stay calm in the evening hours. Encourage them to stick to simple activities that aren’t too challenging or frightening.
Frustration and stress can add to their confusion and irritability. If they have mid-stage or advanced Dementia, watching television or reading a book might be too difficult for them.
Instead, consider playing soft music to create a calm and quiet environment.
It might be a nice time for them to snuggle with a beloved dog or other pet.
For someone with Dementia, the world can become a scary place.
Comfort and familiarity can help them cope with this difficult time in life. Help fill your loved one’s life and home with things they find comforting.
If they move into a hospital or assisted care home, furnish the space around them with cherished items, for example, bring their favorite blanket or family photos to the new facility.
This may help ease the transition and curb their Sun – Downing symptoms. Each person has different triggers for Sun – Downing.
To help identify your loved one’s triggers, use a journal or smartphone app to track their daily activities, environments, and behaviors.
Look for patterns to learn which activities or environments seem to make their symptoms worse. Once you know their triggers, it will be easier to avoid situations that promote agitation and confusion.
Sun – Downing syndrome can be exhausting, not just for your loved one but for you too.
As a caregiver, it’s essential to take good care of yourself, you’ll be in a better position to give your loved one the patience and support they need when you’re rested and healthy.
Try to eat a well-balanced diet, exercise regularly, and get enough sleep at night.
Ask other family members or friends to spend time with your loved one, so you can enjoy regular breaks.
You can also ask your doctor about respite care and other professional support services, which can help you take time out from your caregiving duties.
Urinary tract infections (UTI’s) are common infections that can affect the bladder, the kidneys and the tubes connected to them.
Anyone can get them, but they’re particularly common in women. Some women experience them regularly (called recurrent UTI’s).
UTI’s can be painful and uncomfortable, but usually, pass within a few days and can be easily treated with antibiotics.
UTI’s can cause sudden confusion (also known as delirium) in older people and people with dementia.
If the person has a sudden and unexplained change in their behaviour, such as increased confusion, agitation, or withdrawal, this may be because of UTI.
The person may not be able to communicate how they feel, therefore it is helpful to be familiar with the symptoms of UTI’s and seek medical help to ensure they get the correct treatment.
It is also important to be aware that any infection could speed up the progression of Dementia and so all infections should be identified and treated quickly.
The Deprivation of Liberty Safeguards are an amendment to the Mental Capacity Act 2005.
They apply in England and Wales only. The Mental Capacity Act allows restraint and restrictions to be used – but only if they are in a person’s best interests.
Extra safeguards are needed if the restrictions and restraint used will deprive a person of their liberty.
These are called the Deprivation of Liberty Safeguards. The Deprivation of Liberty Safeguards can only be used if the person will be deprived of their liberty in a care home or hospital.
In other settings, the Court of Protection can authorize a deprivation of liberty.
Care homes or hospitals must ask a local authority if they can deprive a person of their liberty. This is called requesting a standard authorization.
There are six assessments which have to take place before a standard authorization can be given.
The Mental Capacity Act allows restrictions and restraint to be used in a person’s support, but only if they are in the best interests of a person who lacks the capacity to make the decision themselves.
Restrictions and restraint must be proportionate to the harm the caregiver is seeking to prevent and can include:
* Using locks or keypads which stop a person going out or into different areas of a building.
* The use of some medication, for example, to calm a person.
* Close supervision in the home, or the use of isolation.
* Requiring a person to be supervised when out.
* Restricting contact with friends, family, and acquaintances, including if they could cause the person harm.
* Physically stopping a person from doing something which could cause them harm.
* Removing items from a person which could cause them harm.
* Holding a person so that they can be given care, support or treatment.
* Bed rails, wheelchair straps, restraints in a vehicle, and splints.
* The person having to stay somewhere against their wishes or the wishes of a family member.
* Repeatedly saying to a person they will be restrained if they persist in a certain behaviour.
If a standard authorization is given, one key safeguard is that the person has someone appointed with legal powers to represent them.
This is called the relevant person’s representative and will usually be a family member or friend.
Such restrictions or restraint can take away a person’s freedom and so deprive them of their liberty.
They should bear in mind when considering whether the support offered to a person is the least restrictive way of providing that support.
Other safeguards include rights to challenge authorizations in the Court of Protection and access to Independent Mental Capacity Advocates
DNR (Do Not Resuscitate)
DNAR (Do Not Attempt Resuscitation)
Cardiopulmonary resuscitation is an emergency treatment used to restart a person’s heart and breathing if they stop (called a cardiopulmonary arrest).
The aim is to keep the person alive while a correctable cause of the cardiopulmonary arrest is identified and treated. CPR includes:
* Chest compressions (repeatedly pushing firmly on the chest)
* Inflating the lungs (by inserting a tube into the windpipe or by placing a mask over the mouth and nose)
* Defibrillation (using electric shocks to restart and correct the heart’s rhythm).
(below) Some Excellent advice from the Great Teepa Snow.
Pictured with me over on the right.
1) Learn more about the disease
Learn what it’s going to do. Learn what it’s not going to do. Learn the basics. Dementia isn’t just about memory loss. The many forms of dementia are brain disease that impacts a person’s capacity to process information and do things. People living with dementia have different life skills. Their abilities change as the disease evolves.
2) See it as a journey
Dementia is not static. Like life, it’s constantly evolving, changing, and morphing into something new. Smart people understand that it’s a journey, and it’s likely to be a fairly long one – more like a marathon than a sprint. You’re not just going away for the weekend – it’s more like moving to a new country.
3) Don’t be a Lone Ranger
It’s hard work being a care partner with someone who lives with dementia. It’s not a one-person job. It takes a team. Care partners need as much support as people living with dementia do. Ask for assistance. Seek resources. Put the oxygen on yourself first. Get an army of help. If family won’t help, find friends who will. If you don’t have friends who will explore every other avenue you can. You can’t do it alone. Don’t try.
4) Learn “positive approach to care” skills
I know from experience this is one of the most important things. I self-taught myself as I went, but things would’ve been much easier if I knew then what I know now. In particular, the more you know how to deal with challenging behaviours in a positive and constructive way, the less stressful and difficult your journey will be.
5) Become a care PARTNER
You will make lots of mistakes. That’s okay. But don’t keep doing something that doesn’t work over and over again and expect to get different results. If something doesn’t work, you need to change what you’re doing, because the person with dementia isn’t going to change their behaviour to fit your needs – you have to change to fit theirs!
An excerpt from the free eBook
19) We must get into the persons reality as it is impossible for them to get into ours. They believe what they believe to be true.