Nearly 6 million Americans are living with dementia. Based on the estimated 16 million Americans who provide free care to dementia patients, it would appear that many who live with the disease are being taken care of by family members.
Whether you're providing all dementia assistance, yourself, or joining forces with a long-term home caregiver, it's valuable to have a thorough understanding of the disease.
What kinds of dementia are there? How does the disease progress? What are the possible treatment options?
Read on to have all of your questions about dementia assistance answered in our complete caregiving guide.
Different Types of Dementia and Their Causes
While the different types of dementia are caused by different malfunctions in the brain and body, they all have one thing in common. They all lead to memory loss and alter the patient's ability to use language and make decisions. It is common for dementia caregivers to note a change in their patient's personality as the disease alters brain functions and limits mental abilities.
Dementia most commonly occurs in people who are 65 or older, but that does not mean that it is a "normal" part of aging. It also does not mean that younger people are incapable of developing dementia, but rather that they are less likely.
According to the Alzheimer's Association, Alzheimer's accounts for 60 to 80% of dementia cases. Alzheimer's is caused by brain cell death.
As brain cells stop working, they disrupt the flow of communication our brain requires. In other words, some part of the patient's brain may be aware of certain memories or other cognitive functions. However, the message is not being received by the parts of the brain that would allow them to access these memories.
As more brain cells die over time, the symptoms of Alzheimer's worsen.
Roughly 15 to 20% of dementia cases can be attributed to vascular dementia. Vascular dementia is harder to diagnose than Alzheimer's and because it's less common, it is often overlooked.
Vascular dementia is caused by an insufficient supply of blood to the brain. Without the right amount of blood, the brain fails to receive the proper nutrients and oxygen it needs to function properly.
Vascular dementia often results from strokes, although many patients experience "silent" strokes, meaning that the effects and symptoms go unnoticed. Possible risk factors include high blood pressure, smoking, and diabetes.
Lewy Body Dementia
Lewy Body dementia is said to be the third most common type of dementia, accounting for an estimated 5 to 10% of dementia cases. Lewy Body dementia is caused by abnormal protein deposits or buildups, called Lewy Bodies, occurring in the nerve cells. These deposits disrupt the flow of messages in the brain, making normal cognitive functioning impossible.
Doctors can provide a "clinical" diagnosis of Lewy Body dementia based on the patient's symptoms. A clinical diagnosis is essentially a doctor's best guess. Lewy Body dementia can only be officially detected during a postmortem autopsy.
Less Common Types of Dementia
There are a few other types of dementia that are less common and have limited information and research surrounding their causes and prevalence.
Parkinson's disease has been associated with dementia, although not all patients with Parkinson's will develop the symptoms of dementia. It works similarly to Lewy Body dementia, causing a buildup of proteins in nerve cells.
Fron-to-temporal dementia is a term that describes a few different diseases that all affect the front and sides of the brain. Doctors are unclear about the cause. However, there is some evidence that it is more likely to occur in people whose genes express hereditary mutations.
Finally, Creutzfeldt-Jakob disease makes up the rarest form of dementia, affecting less than one in one million people worldwide every year. Creutzfeldt-Jakob disease works much more quickly than other types of dementia and most patients die within a year of developing the disease. It occurs when prion proteins throughout the body fold into a three-dimensional shape, both in the body and in the brain.
Common Symptoms and How to React as a Caregiver
Chances are, dementia patients will start displaying symptoms of the disease before any diagnosis is given. Recognizing these symptoms early and reacting appropriately will help to receive a proper diagnosis and proceed with a treatment plan.
In the early stages, patients will display moderate memory loss. For example, they may misplace things more frequently and experience mild confusion about time and place.
They may also lose some of their cognitive abilities. It's not uncommon for people with dementia to develop new difficulties with language and simple problem-solving. They also may have difficulty visualizing things that aren't in front of them or lose spatial awareness, even in familiar places.
Oftentimes, patients will feel irritable or even angry as their memory and cognitive abilities begin to slip away. The patient may experience mood swings and develop depression. While these changes in mood are likely the result of their dementia, they should be treated separately with psychological care such as therapy.
How to React
As you find yourself in the caregiving role during these early stages, it's important to react properly to these symptoms. First and foremost, take your loved one to the doctor as soon as possible for a diagnosis and medical advice.
At home, patience is key. Never challenge a dementia patient's memory or express frustration to them that they can't remember certain names or events.
Because they are losing cognitive abilities, you will need to alter your communication style. Avoid pronouns and non-specific words. Instead, use names and nouns to describe people, locations, and commands as directly as possible.
Finally, schedule tasks but anticipate that they will take longer than they used to. It's important to develop a routine early that will bring some balance and normalcy to the patient's life, but some days will go more smoothly than others. This includes basic activities like bathing and dressing as well as bigger tasks like attending doctor's appointments.
As you get used to a schedule, try to make sure that the patient is only taking short, infrequent naps. It is possible for dementia patients to lose track of day and night, and a full reversal of their sleep schedule is possible if they don't sleep through the night.
Provide options throughout the day rather than asking open-ended questions. For example, ask, "Would you like to work in the garden or go for a walk?" rather than asking, "What do you want to do?" One of the most important aspects of dementia assistance is giving the patient the sense that they have control over their lives without giving them an overwhelming amount of options.
How Dementia Progresses
As dementia progresses, the causes will worsen. For example, Alzheimer's patients will lose more brain cells over time and symptoms will become more severe as a result. If you want to know more about the medical progression of dementia, talk to the patient's doctor. Here, we're going to discuss the progression of symptoms so you know, as the caregiver, what to expect on a day to day basis.
The Middle Stages
During the middle stages of dementia, many of the early symptoms will worsen. For example, a patient who had trouble finding their way around familiar stores and places outside of the home may become lost at home. A patient who had trouble remembering certain words may find it difficult to string together full sentences or communicate their needs.
Additionally, communication and cognitive abilities will worsen. Many dementia patients begin to repeat themselves at this stage, asking the same questions or telling the same stories in a short period of time.
You may also begin to notice the patient wandering more. Once this begins, you will need to keep a closer eye on them and consider keeping certain doors locked.
At this stage, the patient is likely to become easily disoriented. They make think they are somewhere else or express a sense of urgency that they need to go somewhere (possibly from their past). If left unsupervised, dementia patients may wander to the point that they are lost and won't have the tools to contact you or find their way home.
The Late Stages
The late stages of dementia require near-constant care. Patients will lose the ability to take care of themselves and may become completely inactive and bedridden. At the very least, physical abilities like walking and balancing will worsen.
The hardest part for caregivers in this final stage is the complete memory loss dementia patients usually go through. As dementia advances, patients often forget who people are, including their closest friends and family.
As a result of this constant disorientation, the patient may experience intense mood swings. While this can be painful and frustrating for the caregiver, it's important to remember that they're lashing out because they don't know where they are or who they're surrounded by. Aggression is not uncommon at this stage, and if it escalates to violence, at-home care may no longer be an option.
Rare Symptoms of Progression
The progression we have just covered accounts for most of the experiences dementia patients will undergo. Certain types of dementia, specifically Lewy Body and Parkinson's-related dementia, may lead to unique symptoms in addition to the typical symptoms.
As these types of dementia progress, patients often begin to hallucinate. Combined with the general disorientation and memory loss, this can lead to feelings of distress or fear.
Treatments for Dementia
Unfortunately, there is no treatment proven to slow or reverse dementia at this time. There are constantly new treatments undergoing clinical trials. Talk to the patient's doctor about possible treatments to stay updated on what is available.
There are, however, a few things to expect from the medical treatment of dementia. Doctors will likely need to perform a brain scan or blood test to narrow down the type of dementia and how far it has spread in the patient's brain. They will also want to perform semi-regular cognitive tests that will help them evaluate the patient's thinking skills, memory, and other cognitive functions.
Medications may be prescribed to lessen the effects of dementia symptoms. Cholinesterase inhibitors are often prescribed to dementia patients, as they boost the levels of brain chemicals that are involved in memory performance. Memantine may also be prescribed for similar reasons.
Depending on the mental condition of the patient, other medications may be prescribed to boost their mental wellbeing. For example, doctors may suggest the use of antidepressants or medications that suppress hallucinations.
Dementia Assistance Tips
As caregivers provide dementia assistance, there are a few things that they can do to help both the patient and themselves.
Reach Out for Professional Help
Even if you feel equipped to take care of the patient yourself, it's important to reach out for help when you need it. Look for homecare organizations that provide respite care and can relieve you from your duties for short periods of time.
For caregivers who have to work or fulfill other duties, finding an organization that provides companion care can be of great help. This allows the patient to remain at home as desired but still receive assistance with day-to-day activities like bathing, eating, communicating, and running errands.
Keep the Patient Active as Long as Possible
It will become increasingly difficult to keep the patient physically and mentally active, but it's important that you try. Get the patient out of the house for low impact physical activities like short walks. Involve them in quiet social activities as long as they are still capable of communication.
The more you help the patient to practice cognitive skills like speaking and problem solving, the easier those things will be for them. Avoid patronizing them during the process but don't push too hard. If the patient is recollecting a story or performing a task like solving a puzzle, allow them to take breaks when they appear worn out or overly frustrated.
Develop a Regular Bedtime Routine
Routine is key with dementia patients, but especially at bedtime. It is common for dementia patients to experience increased confusion and distress in the later stages of the day, which can make the process of getting ready for bed and going to sleep much more difficult.
Reduce the patient's caffeine consumption as much as possible. Avoid overly stimulating activities in the evening and opt for relaxing activities, like reading to the patient or bathing. The patient's doctor may provide a mild sleeping aid to reduce the risk of sleepless nights.
Don't Forget to Take Care of Yourself
Dementia assistance requires a lot of planning, alertness, and patience. This can be very draining and even isolating for the caregiver. However, because the role is so involved, many caregivers forget to take time for themselves and check in with their own mental wellbeing.
One of the best ways you can take care of yourself during this time is to ask for help when needed. At Lifestyle Home Care, we offer several different programs that will ease some of your burdens. Contact us for more information about the assistance we can provide and we will answer any questions you may have!