What is Sundowing?

Have you ever heard of sundowning? Has your PSW told you that your mom experiences sundowning? Has someone at the long-term care home asked if your mom has sundowning before she moves into the home?

Sundowning is when a person living with dementia gradually becomes more agitated or confused and shows personality changes when the day turns into the evening. Most often, this happens around 4pm.

Some common symptoms of sundowning include: sudden behaviour changes, difficulty speaking and thinking clearly, hallucinations, verbal and/or physical aggression, pacing/wandering, paranoia, and increased confusion. As we go through some of the causes of sundowning, you’ll see that sundowning is often just a normal reaction to situations we’ve all experienced.

Sundowing

One of the most common causes of sundowning is simple exhaustion. For someone living with dementia, simple tasks throughout the day are more tiring than for someone without dementia. This is because they have fewer cognitive and physical resources to engage in those tasks and activities like going for a walk, preparing a meal, and having conversations. Just like when you are sick you get tired more easily when doing everyday tasks, people living with dementia experience this feeling daily. And just like when you are tired, you usually get more irritable, have less patience, and react quicker to things that annoy you. The same thing happens with people with dementia. But we call it “sundowning.”

So if exhaustion causes sundowning, then how can you prevent it?

Easy! Take a nap! Who doesn’t like naps after all?! Recharge, try a nap, try sitting quietly out in the sun or in a quiet room. Watching TV or listening to the radio may help but it may be too stimulating to the senses to allow the person recharge.

Another common cause of sundowning is medications wearing off later in the day. Ask your doctor for extended release or timed release medications so that the effects of the medications are more consistent throughout the day. Or perhaps there is a better schedule for taking the medications that results in a steady reaction rather than ups and downs.

Another very possible cause of sundowning is the reality your loved one is living in. If for example, they are back in their 40’s and their husband always comes home at 5pm, and it’s a little before 5pm now, it’s a natural reaction to get excited or anxious about waiting for their husband to walk in the door. Then what if it passes 5pm and their husband isn’t home yet? Then they could start to get worried and start pacing the home; getting irritable and cleaning vigorously.

Anytime you are working with someone living with dementia, you have to try to get into their head and understand their reality. If you figure out that your loved one is worried that their husband isn’t home yet, try telling them that they called earlier and said that they were going to be late because they had a business meeting, and not to worry. The best way to deal with these situations is to validate your loved one in their feelings and then give a plausible reason as to why their husband isn’t home yet, This reason should be something that would make your mother relax and not worry.

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Finding the Balance – Working Against Burnout

As a spouse, caregiving can become incredibly stressful. As you watch your relationship with your wife change from spouse to caregiver, emotions like love and compassion may begin to be shadowed by anger, resentment, guilt, and exhaustion. It is no walk in the park to care for your spouse who has succumbed to the symptoms of dementia.

There are a lot of instances when a spouse will take on all, and I mean all, of the responsibility to care for your loved one. They were responsible for the finances and bills, but are now also responsible for groceries, laundry, and organizing appointments. At first, you may gain a sense of appreciation for your loved one, realizing how much work these tasks actually required. But over time, you may feel it is unfair that what was once a two-person job, now completely falls to you. Now, there’s no time for you to go out with your buddies, to go to the club and hang out with the boys over a whiskey and cigar. There’s no time to go for your daily walks in the woods that always gave you so much peace and relaxation. The days of going to the gym and movies are gone. All your time is spent caring, worrying, and organizing two lives so completely that all of a sudden, you want to scream, cry, and just leave it all behind.

burnout

But you don’t. You stay, and you help. But you can’t do it for much longer. So what do you do now? You couldn’t live with yourself if you just left. Not after an entire life with this person who has given you so much too.

So what are your options?

There are actually a whole bunch of resources out there to support you and your loved one. Using these resources help so that you don’t get burned out and your loved one gets the best possible care and support they need. It’s a win-win! So, let’s look at what’s out there.

First, you have volunteers. The easiest way to get access to a volunteer is through the Alzheimer’s Society chapter nearest you. These volunteers can have a range of purposes but the most common is companionship. Companionship is when a volunteer comes to your home, and spends time with your loved one. Often, they come for 2hrs at a time, once per week. This can vary from person-to-person and from situation-to-situation. During the 2-hour affair, your loved one and their companion will engage in different activities such as cooking or baking, gardening, knitting, going through photo albums, doing crosswords, or just chatting away. Now during this time, you can either stay with your loved one and their companion, you can go off in your home and busy yourself with other things, or you can leave to run errands or go catch a cup of tea with a friend. Usually in these situations, you’ll stay home for the first visit or so until you’ve gained trust in your companion, and then you’ll feel more freedom to go and enjoy your time free of caregiving.

Another great way to find some free time for yourself is through day programs. Some day programs are free, some are a pay-per-service, and others require a membership. Day programs can range from 1-2 hour sessions all the way to full days (9am-5pm). You can find day programs through the VON, the Alzheimer’s Society, LumaCare, and many others.

There is also a service called Respite Care. This is where your loved one goes to a facility for a couple of days to a month or so, and is cared for there. This type of service allows you to gain some much needed rest and relaxation. You are free to go on vacation, go visit relatives and friends, go to the spa, go to that hockey game with the boys. Pretty much do anything you want. There are many retirement homes that offer respite care and can be found in this list. Not all retirement homes offer this service.

Another common stressor when caring for someone with dementia is groceries and meal preparation. But don’t worry, we’ve got you covered here too. Services like Meals on Wheels, or Heart To Home Meals, and Shine At Home all deliver nutritious meals to your home. No need for grocery shopping, cooking, or dishes. Meals on WheelsEnjoy cooking? Then why not try grocery delivery? Many grocery stores now offer pickup and delivery. Loblaws, Metro, and Walmart offer free grocery pickup after you order online. And companies like Anytime Grocery offer grocery delivery.

We’re not done yet. What about homemaking? Do you hate the days when you have to clean the toilet? Do laundry? or vacuum? Again, there’s a service for that. We understand that in a partnership, one person doesn’t do everything. Both spouses worked as a team to accomplish the daily doings of life. But when one gets sick and can’t contribute as much anymore, you can be sure that there is a service out there to help you out. Companies like Retire-At-Home and Bayshore offer these types of services.


Most importantly, don’t do it alone. We all need help, whether it’s as simple as screwing in a light bulb, someone to vent to, or as complex as getting help with personal care like going to the bathroom or getting dressed. We all need help and there is certainly no shame in that.

One of the best things you can do for your loved one is to take care of yourself. If you’re not in good shape, then you won’t be able to support your loved one. It’s like the concept on a plane: put your own oxygen mask on first, then help others with theirs. If you don’t put your mask on first, you’ll only be able to help a handful of people before you collapse. But if you put yours on first, you can go around the entire plane and help everyone with theirs.

The Stigma About Alzheimer’s Disease

You got a diagnosis of Alzheimer’s disease.

Your friends find out.

Your friends stop coming around.

People stop asking for your opinion.

You get excluded from conversations.

People talk about you as if you weren’t there.


This is the stigma of living with Alzheimer’s disease or other dementia


The stigma of dementia often comes from a lack of knowledge and understanding of what dementia even is. A lot of people get scared from the stereotypes that a person living with dementia will randomly hit or attack you. A family friend of mine actually said that she wouldn’t go and see one of her very good friends because she was worried that she would get punched or kicked unpredictably.

People living with dementia are still people. Their behaviours and actions can be predicted if you pay attention to mood, surroundings, environment, and life history.

Stigma

A lot of people too, will “write off” a person with dementia because they feel there is nothing that can be done. There is a lot that can be done. It is true that dementia is progressive and will end in death, but there are lots of things you can do to make the last years of life happy and productive. Just as when someone gets a diagnosis of terminal cancer, you still do things with and for that person.

Others may believe that people living with dementia don’t understand what’s going on around them or what’s being said. This sentiment is also wrong and the line of thinking allows people to treat those living with dementia without dignity and respect. People living with dementia can understand what is happening around them. They pick up on people’s emotions easily and react accordingly. For example, if you are arguing with someone and the mood is very negative, your loved one with dementia may react with anger, sadness, or a want to protect – depending on their personality. One of the easiest ways to influence a person living with dementia into a positive mood, is to generate positive vibes, smile, and laugh.

Also, people with dementia can still contribute in many aspects of life and society. These people have lived. They have years of experience, memories, and lessons learned. Many of our WWII survivors are +85 years, and can pass on incredible teachings that influence politics, business, and how you live your daily life. Talk to a veteran and learn about communities coming together to support each other through the Great Depression, and learn gratitude for what you have as compared to what they had – Freedom and Security for one. They have skills and wit. I knew a man with dementia who handmade acoustic guitars, another who built ships in bottles, and a woman who knitted her entire family’s wardrobe. These dying skills and trades are useful and fun to engage in and it is in our elders and those living with dementia who retains this information. It’s not in a book or on the Internet. It’s in your grandmother and grandfather.

Lastly, dementia is like any other illness or condition. People don’t want to be labeled by it. If you had cancer, do you want to be known and treated as that woman with cancer? Or do you want to be known and treated as Kathy, the wife, mother of 2 boys and 1 girl, a mechanical engineer, and a sister to John and Diane? You’d want to be treated as a human with a present, past, and future life.


There are all these causes of stigma towards dementia out there, but there are 3 simple ways you can stop it, and help your loved one living with dementia to live well.

3 Ways to Combat the Dementia Stigma:

  1. Stand Up – Don’t put up with comments that distort the image of dementia into a negative light. Learn and inform people of the facts; don’t be afraid to ask questions and learn more.
  2. Treat with Respect and Dignity – Remember that people living with dementia are people first. They are not defined by the diagnosis. In fact, being treated with disrespect and without dignity can really impact a person’s health and well-being. So much so that symptoms can worsen and progress at a much faster rate. Treat each person how you would want to be treated.
  3. Continue your relationship – be a good relative/friend and support your loved one. The worst thing for someone living with dementia is for their friends and family to leave as soon as the diagnosis is given.

 

“It’s a Horror Movie” – In the News

By Eleanor Pineau

Yesterday, CBC News released an article detailing the death of a man in 2013 that occurred in a nursing home. Allegations of resident-to-resident physical abuse were cited as possible contributing factors to this man’s death. After security footage was released, these allegations turned out to be true.

This case prompted further investigation into the rise of resident-to-resident physical abuse in nursing homes. In response, CBC News hired two statisticians to probe deeper. Unfortunately the outcome does no good for the population with dementia.

I was abhorred by the following statement: “They found that as antipsychotic usage went down, reports of resident-on-resident abuse went up.”

Without being able to analyze the methodology of their study, these results are absolutely useless and can lead the public down very dangerous alleyways. Anyone could conclude this outcome with very simple statistics.

This finding is not causative, meaning that the decline in antipsychotic use did NOT CAUSE an increase in resident-on-resident abuse. They could be related, but one does not cause the other. Therefore, increasing the use of antipsychotic drugs in people living with dementia will not reduce the incidents of resident-on-resident abuse.

To show you how ridiculous this finding is, here’s a famous example of a study that also had the same flaw: It was found that Switzerland has a very high breast cancer rate and they also have a very high consumption of fat. It was concluded that a high fat diet was causing this high rate of breast cancer. But this is not true. A high fat diet does not directly cause breast cancer. If it did, then many more Americans would have breast cancer than is currently present. The risk factors of breast cancer are quite numerous including age, genetics, early menstruation, low amounts of physical activity, being overweight or obese and more. With this last risk factor, consuming a diet high in fat may contribute to being overweight or obese. So in a roundabout way, a diet high in fat may increase the risk of breast cancer, but it does not cause breast cancer. More importantly, you also need other risk factors present like age and genetics to get breast cancer. A high fat diet alone is not going to cause breast cancer. This is the same conclusion we can draw about antipsychotic use and resident-on-resident abuse. A reduction in antipsychotic use has not caused an increase in resident-on-resident abuse, and there are many other factors at play contributing to the rise in abuse.

Let’s quickly look at why people living with dementia should generally not be prescribed antipsychotics.

(I say ‘generally’ because there are instances where the use of antipsychotics is appropriate such as when that person has both dementia and schizophrenia. But you must consult your psycho-geriatrician to ensure that these medications don’t cause serious side effects with other medications and co-morbid conditions.)
  1. Dementia is not a psychotic disorder.
  2. The use of antipsychotics to treat things like aggression is an “off-label” use that has not been studied for efficacy or safety.
  3. When you use an antipsychotic on a person living with dementia, you are restraining them – the same way as you would restrain someone by tying them down to a bed, except this time, you are using a drug.
  4. Antipsychotics used in people without a psychotic condition increases confusion, the risk of falls, and death. They cause tremors and involuntary movements.
  5. Antipsychotics used in people without a psychotic condition cause personality changes, increased fatigue, to the point where a person who used to be full of life starts to resemble a zombie. Trust me, it’s not a very nice sight.
No to drugs
Antipsychotics are not the answer to reducing resident-on-resident abuse

Another part of this article that really upset me was the statement that one of the reasons behind increased abuse in nursing homes is the rise in the number of nursing home residents who have dementia. It is articles like these that perpetuate the “aggressive” stigma staining all people living with dementia. Without further explanation, this statement leads people to believe that people with dementia are aggressive, unpredictable people who should be restrained, whether physically or chemically.

People living with dementia get angry just like you and me. What happens when you are trying to tell someone you’re angry but they won’t listen? You might start to yell. But that doesn’t work either. Next you might throw the pillow or your phone. But that person still ignores you. Well by this time, your temper has boiled over and you might hit them…or want to. In this situation, there are a couple of differences between you and a person living with dementia:

  1. You are able to better communicate that you are upset and why. Someone living with dementia may have lost the ability to verbally communicate.
  2. When you are so angry that you want to throw or hit something/someone, you are able to restrain yourself and inhibit those desires. A person with dementia has a reduced ability to inhibit socially inappropriate behaviours. Remember, we were taught as children to use our words instead of our fists because that is what social norms dictate. But as a person loses those teachings/memories, they revert back to more natural processes – they hit.

Just like the relationship between antipsychotic use and the prevalence of resident-to-resident abuse, there are many other factors at play that are contributing to an increase in resident-to-resident abuse other than a rise in cases of dementia. Some other factors that are contributing to the rise in resident-on-resident abuse include: insufficient staffing ratios, poor dementia training of healthcare professionals, ineffective treatment of pain, overcrowding, and many more.

The humane treatment of dementia nor is dementia itself causes of increased resident-on-resident abuse. Dementia is not the problem. How we support people living with dementia is.

Please click the link to read the original article. “It’s a horror movie” – Nursing home security footage provides raw picture of resident violence problem

Please contribute to this conversation by commenting in the box below.

 

Am I Selfish?

By Eleanor Pineau

Family caregivers of someone with dementia have a tough job. These Heroes are essentially on-duty 24/7. They direct not only their own lives, but the life of the person with dementia…to an extent. They are in-charge of personal care (i.e., bathing, toileting, grooming, etc.), meals, socialization, finances, housing – anything that goes into “LIFE,” falls on the family caregiver.

Family caregivers often become overwhelmed and stressed out. And we all know what stress can do to us! Stress breakscaregiver us down from the inside out; it’s with us almost 100% of the time; it makes us eat; it makes us stop eating; it makes us sleep non-stop; it makes us stop sleeping; it makes us gain weight; it makes us get physically sick. Stress can be traced to the root of almost all physical ailments, and absolutely worsens any physical or psychological illness.

After all family caregivers do, I still get asked: “Am I selfish?”

Am I selfish if:

  • I want to take a bath?
  • I want to go to the gym?
  • I want to go on a vacation?
  • I want to see my friends?
  • I don’t want to do it anymore?

These questions, among others, are completely normal. So what’s the answer?

You. Are. Not. Selfish.

It’s completely normal to want to take a bath, go to the gym, go on vacation, see your friends, and take a step back from caregiving. It’s also completely normal and even HEALTHY to DO those things! Do th
em!

If you find fulfillment, or a sense of pride, duty or accomplishment in caregiving, then do it. But know that you also need to take care of yourself. Helping someone in their time of need is one of the greatest gifts yo
u can give that person, AND yourself. But you shouldn’t go into caregiving every day with dread or feeling dispirited. So how do you stop or prevent feeling this way?

Take. Care. Of. Yourself.

I know it’s easier said than done, but go take a bath, go to the gym, go on vacation, see your friends, and take a step back from caregiving.

There are many community resources that can help you along the Dementia Journey. Meal delivery services can save you time so you have more time for yourself. Respite care is great because you can be assured your loved one is safe and well-taken care of while you can go see friends, go to the gym, or go on that trip you’ve been longing for.

It is incredibly important to take care of yourself so that you can continue to care for your loved one, and so that you don’t feel your life is on hold. Your life is NOT on hold. You are growing, developing, learning, and changing every day. Though you may not feel it all the time, you are tackling and overcoming one of life’s greatest challenges. You Are Thriving. Stay strong and continue to thrive by balancing caregiving and self-care.

Because we NEED YOU.

Please share in the comments your tips and tricks for making the Dementia Journey a little easier so you can put time into self-care 🙂

Steps to Remember your Daughter

By Eleanor Pineau

We all know: Exercise is good for you. Go for a run. Take the Stairs. Lift some weights. Walk or bike, don’t drive.

But how important is exercise really? And how important is exercise to someone that has dementia?

If there was a magical pill for all of our aches and pains, it would be exercise. The number of things exercise prevents AND treats is, well, EVERYTHING. High blood pressure? Go exercise. Depressed? Go exercise. In pain? Go exercise. Afraid of getting dementia? Go. Exercise. Name a condition or symptom, and exercise is bound to have a positive impact on it.

A group of elderly people exercising together on balance balls

Exercise in older populations is incredibly important to maintain independence, dignity, and quality of life. It is also the most important intervention to prevent falls. This is extremely important as falls is a predictor of loss of independence and death. These factors remain applicable to persons with dementia.

People often think that once someone is diagnosed with dementia, that all is lost, and exercise is not needed. Because, well, “they’re not all there anymore.” Right?

Wrong.

Persons with dementia need to exercise. Oftentimes, these people are also quite capable of physical activity. They need to exercise in order to prevent falling, control other comorbidities/diseases like heart failure, osteoporosis, arthritis, high cholesterol levels, and so forth. They also need exercise in order to prevent depression, delirium, and to help them reduce any pain.

Another thing exercise helps with is drugs. Unfortunately, many people with a cognitive impairment like dementia, take multiple drugs. Taking too many drugs is very dangerous, especially in someone with dementia. Side effects or interactions between drugs are very likely, and these can cause heart attacks, accelerated cognitive decline, and even death. Exercise helps to fix the reason they are on a drug. For example, exercise helps with cholesterol levels so now they don’t need to be on that cholesterol medication.

Many people with dementia are put on anti-psychotics because they have sedative properties. These sedatives are used to sedate the person with dementia so that they no longer yell, wander, or show physical aggression – these are “problem/responsive behaviours” aka “personal expressions.” These drugs actually cause greater cognitive decline, and physical decline – so independence is reduced. In lieu to these drugs, we should be prescribing an exercise regime. Oftentimes, the reason why someone with dementia is yelling, wandering, or being physically aggressive, is because they are in pain, they’re agitated, they’re bored, or they need some physical stimulation. Well you guessed it, exercise cures these!

Exercise!

A lot of people look for a cure or for something that will slow the progression of dementia. And you guessed it again. So far, the only thing that holds promise to prevent or slow the progression of dementia is exercise! Exercising increases blood flow to the brain which increases nourishment and waste removal. It also enhances neurogenesis, or neuron growth! (So in dementia, neurons are constantly being destroyed, and this is why we see memory loss, poor judgement, poor communication, etc. But exercise stimulates the growth of neurons, and keeps neurons healthy which prevents their destruction!) So in essence, exercise slows the rate of dementia, which keeps the person happy and healthy for longer! They can remember more things throughout the day, they have better judgement, and they can find the words they’re looking for!

Exercise!

But where to start? You have a couple of options:

  1. Exercise at home on your own
  2. Attend a fitness class in the community
  3. Access personal training

 

  1. Exercising at home on your own

If you and your loved one prefer to exercise at home without any expert advice, you need to take into consideration a couple of key things. First, make sure that your loved one with dementia is wearing comfortable, proper-fitting shoes. This will reduce the risk of falling. Second, make sure your workout space is clear of debris and you’re in a well-lit room. Again, these will reduce the risk of falling. Third, make sure you use proper equipment and safety measures. For example, you should consult a personal trainer or physiotherapist to ensure that you aren’t doing any movements that are contraindicated by a medical condition. If you have osteoporosis, you should not be doing any twisting motions with your back. Consulting a personal trainer or physiotherapist will undoubtedly ensure your safety. Lastly, the most important thing is to have fun! So turn up your favourite music and get your body pumping!

  1. Attending a fitness class in the community

There are lots of exercise classes in the community. You can find them at gyms, churches, or senior centres. Unfortunately, most are not tailored to people with dementia. There is however one program – Minds in Motion – that is delivered by the Alzheimer Society. This exercise program is catered to persons with dementia. It runs once a week for 8 weeks in a community recreation centre. Participants engage in 45-60mins of physical activity, and 45-60mins of mentally stimulation activities.

To find out more, follow this link: http://www.alzheimer.ca/en/on/We-can-help/Minds-In-Motion

  1. Using a Personal Trainer

If you are looking for more one-on-one training, you can access a personal trainer who specializes in dementia. This is a great way to get specially tailored exercise programs that are perfect for you! Because these programs are tailored to you, the time spent exercising will give you the most bang for your buck. You will maintain your independence for longer, be able to get up off the toilet easily, walk to the grocery store, and so much more. Personal training can be offered in a facility or in the home, whatever is preferable to you. Looking for a personal trainer who specializes in dementia in the Waterloo-Wellington Region? Contact MemoryFit at 905-299-1206.

 

So take that magic pill, no matter which way you do it, so you can live independently, maintain your memory, language skills, judgement capabilities, and have fun with your family!