Dementia is a general term describing the impaired ability to think, remember or make decisions that impact daily activities. It is not a normal part of aging. Dementia can also cause mood swings and changes in behavior and personality. All these progressive changes pose many challenges for caregivers. Understanding what dementia is, the causes of dementia, the signs and symptoms of dementia, the types of dementia and dementia care services is essential for dementia caregivers. In this post, we also provide dementia caregiver tips for home care for dementia patients.
What is Dementia?
Dementia is a prevalent condition affecting those over the age of 65 years of age. It is a medical condition distinguished by the gradual deterioration of memory and an individual’s skills, meaning it is a progressive disease with a persistent decline in an individual’s cognitive function.
- Dementia isn’t considered a specific disease but rather it’s a general term to describe a range of medical conditions that are caused by abnormal brain changes. These abnormal brain changes can lead to issues with thinking, problem solving, language, controlling emotions, and memory loss.
- Different diseases cause dementia. Alzheimer’s Disease is the most familiar and most common type of dementia.
- There are many other types of dementia, including Vascular Dementia, Lewy Body Dementia, Mixed Dementia, Frontotemporal Dementia, and more.
- Estimations predict that by 2060, more than 14 million individuals will be suffering from different forms of dementia.
What are the Signs and Symptoms of Dementia?
Symptoms depend on the part of the brain damaged. The common signs and symptoms of dementia may include:
- Loss of Memory: A gradual loss of memory may be apparent in individuals who have dementia, which a spouse or a family member most usually notices. This is one of the common signs and symptoms of dementia.
- Inability to Communicate: Over time, individuals who have dementia may find themselves unable to find the right words to express their thoughts or even communicate with the people around them.
- Lack of direction: Individuals affected with dementia might start getting lost while driving or find themselves unable to remember their address.
- Unable to perform Complex Tasks: Understanding, analyzing, and planning complicated instructions or complex tasks becomes difficult for dementia patients, and they are only able to perform simple tasks at a time.
- Confused State: Individuals who have Dementia often find themselves disoriented and confused. They may forget what they were doing or where they are and require proper counseling by their caregivers.
- Judgement, reasoning and problem solving may be impaired.
- Changes in behavior, including inappropriate behavior, hallucinations, agitation, depression, or anxiety.
What Causes Dementia?
Dementia is an umbrella term describing several diseases caused from changes or damage to nerve cells and how they connect to the brain.
When brain cells are damaged, it affects their ability to communicate with each other.
Different types of dementia are associated with particular brain cell damage in specific parts of the brain.
What are the Types of Dementia?
Dementia is considered an umbrella term, which can be further classified into different types. Four common dementia types include Alzheimer’s Disease, Vascular Dementia, Lewy Body Dementia, and Frontotemporal Dementia.
Four common types of dementia:
1. Alzheimer’s Disease
Alzheimer’s disease is the most common cause of dementia.
It is a progressive neurologic disorder where the brain shrinks and brain cells die. Alzheimer’s disease has a continuous decline in thinking, behavioral and social skills that affects a person’s ability to function independently.
In the United States about 5.8 million people aged 65+ have Alzheimer’s disease, most (80%) of whom are 75+ years old.
Early signs of Alzheimer’s include forgetting things and as the disease progresses there is more severe memory impairment that interferes with the ability to perform routine tasks.
Medications may temporarily improve or slow progression of symptoms. These treatments can sometimes help people with Alzheimer’s disease maximize function and maintain independence for a time. Different programs and services can help support people with Alzheimer’s disease and their caregivers.
To learn more about Alzheimer’s Disease, read our blog post: What is Alzheimer’s Disease?
2. Vascular Dementia
Vascular Dementia is caused by a decrease of blood flow to the brain. Decreased blood flow deprives the brain of oxygen, which can damage the brain.
A common cause of vascular dementia is a stroke, because during a stroke the brain is deprived of oxygen and blood which can damage portions of the brain. A heart attack, aneurysm, blood clot or narrowed blood vessels can also cause part of your brain to go without blood and oxygen.
The specific symptoms seen in Vascular Dementia vary with the area of the brain affected by oxygen deprivation and how long that area of the brain was without blood and oxygen.
Although symptoms of vascular dementia vary, the most significant symptoms to appear relate to problem-solving and speed of thinking instead of memory loss.
Common signs and symptoms of vascular dementia may include:
- Difficulty concentrating, focusing or paying attention
- Difficulty being able to organize one’s thoughts
- Having a hard time controlling urination or having to go a lot
- Poor balance, difficulty walking or numbness on one side of the body or face
3. Lewy Body Dementia
Lewy Body Dementia is one form of dementia characterized by the buildup of proteins in the brain that form into masses called Lewy bodies. It is a progressive disease and causes a decline in mental abilities, possibly visual hallucinations and decrease alertness. It also affects the muscles such as tremors, rigid muscles, difficulty walking and slow movement.
Signs and symptoms of Lewy body dementia include:
- Hallucinations, seeing something that isn’t there sometimes is one of the first symptoms. Patients with Lewy body dementia may hallucinate people, animals or shapes.
- Movement issues Worsening tremors and increased risk of falling
- Autonomic nervous system issues which impact the regulation of body functions and may include sudden drops in blood pressure, urinary incontinence or dizziness.
- Cognitive issues like poor attention, memory loss, staring into space, and confusion.
To learn more about Lewy Body Dementia including symptoms, treatment, and caregiver tips, read out post: What is Lewy Body Dementia?
4. Frontotemporal Dementia
Frontotemporal Dementia describes certain disorders that affect the brain’s temporal and frontal lobes. It occurs when there is a build up of abnormal proteins in the brain leading to some brain cell death and brain lobe shrinkage.
About 60% of the people who have frontotemporal dementia are between 45 and 64 years old.
Symptoms depend on the part of the brain damaged. Although memory normally remains untouched, the symptoms worsen as the disease progresses.
Signs and symptoms of Frontotemporal dementia may include:
- Neuromuscular disease (Parkinsonism) which may include tremor, difficulty swallowing, balance issues and muscle weakness in arms, legs, lips, or tongue
- Language issues such as leaving words out of sentences, unable to form words, or not knowing the meaning of words.
- Acting socially inappropriate like touching strangers, offensive comments or doing things others wouldn’t normally do
- Lack of personal hygiene and empathy
How can Dementia be Prevented?
Although aging is the most significant risk factor for Dementia, there is evidence that shows you can reduce your risk.
Below are some things that may reduce your risk of Dementia.
Healthy Lifestyle: Exercising regularly, drinking alcohol only within recommended limits, maintaining a healthy weight, and smoking cessation can help reduce risk of dementia. Studies have shown that eating heart-healthy can also protect your brain. This includes avoiding a diet rich in saturated fats, sugary foods, or salts.
Stay Mentally Active: Studies show that keeping mentally active and have strong social connections may lower the risk of Alzheimer’s disease and cognitive decline.
9 Dementia Caregiver Tips
Home Care for Dementia Patients
People with Dementia find it challenging to communicate their thoughts and emotions with those around them. It may be up to the dementia caregivers to build communication when providing home care for dementia patients. Dementia care includes good communication that may foster a close bond and allow the dementia caregiver to manage any problematic or complicated behavior.
2. Positive Attitude
It is up to the caregiver to set a positive attitude while interacting with their loved ones. Your loved one may not always be able to comprehend spoken words but usually are aware of your body language and expressions. When providing home care for dementia patients, approach them with love and respect so they feel safe and comfortable.
3. Avoid Loud Sounds and Distractions
Dementia caregivers should be mindful and limit any loud sounds or sudden activity that might startle your loved one. For example, try gaining their attention before speaking or keeping the TV on a low volume.
4. Be Patient
Those affected with Dementia might not always understand long or complex sentences; be patient with them while communicating.
This may include speaking very slowly, using simple words and short sentences, and repeating yourself until the patient understands.
It is also important for dementia caregivers to realize that the person with Dementia might take longer than others to form words and put together their thoughts, so you may need to wait a bit for your loved ones’ reply before moving on to the next sentence.
5. Avoid Complicated Activities
It is essential for dementia caregivers to partake in activities with Dementia patients but be careful about introducing complicated activates or complex tasks.
When providing home care to dementia patients, try to break the activity into numerous steps, conducted one at a time.
This will allow the person affected with Dementia to keep busy without feeling overburdened and create a pleasant bonding experience with each other.
6. Learn More about Dementia and Medical Needs
When providing home care to dementia patients, try to learn more about their Dementia and what to expect from your loved one. For example, if someone with Alzheimer’s does not remember to do something or makes a mistake, scolding them will likely make the situation worse.
Dementia caregiver tips when caring for someone with Alzheimer’s include:
- Establish a regular daily routine. More complicated tasks, like bathing or going to medical appointments, are easier when the patient is more energetic and alert.
- Understand that tasks likely will take longer than you originally anticipated, so allot extra time.
- When trying to talk with your loved one or trying to complete a task with them, consider reducing distractions. For example, turn the music, phone or television off. In addition, do one task at a time.
- Provide clear, simple instructions when trying to do something with your loved one. Also, try giving them step by step instructions in a calm voice.
- Give them some choices every day, but don’t overwhelm them with too many choices. For example, ask if they would prefer coffee or tea to drink, or give them two different shirts to choose from.
- Keep them involved in task, as much as possible. For example, let them wash themselves as you give them step by step instructions.
- Having difficulty getting your loved one to bathe? Read our post How Do You Get an Elderly Person to Bathe which provides insight for dementia patients as well.
Other dementia caregiver tips include:
- Some people with dementia may have balance issues, tremors or hallucinations. Try to organize the home and declutter to make moving around and performing simple tasks (such as eating or dressing) more manageable for them.
- Look around the home to keep your loved one safe. Remove lose rugs, make sure there is adequate lighting and hand bars where needed. Safely implementing routine physical activity may be helpful.
- For those with sleep disorders, try to minimize daytime napping. Dementia caregivers should try to create a calm, soothing, nightly routine and steer away from caffeine in the evening.
- Keep ongoing notes so that you are prepared for a doctor visit. Inform the doctor of any changes, and ask what can be done to help your loved one. For example, depending on your loved one’s condition, pain, depression, assistive walking devices, a shower chair, incontinence, mood, or physical therapy may be topics of discussion.
7. Seek Help
Seek help when you need it.
Constant care of a person with dementia is often stressful. Sometimes dementia caregivers can get respite services to give you a short break.
Some in-home services include companionship services, personal care to provide help with things like dressing or toileting, help with laundry, shopping, and preparing meals.
Click here for more information on respite care.
8. Research Available Community Resources
When providing home care for dementia patients, use community resources available to you.
Caring for a loved one can be challenging, especially if they are suffering from dementia.
There may be resources available in your community that could help you or your loved one. For example, there may be low or no-cost meal delivery programs, visiting nurses, or respite care programs available in your community.
These programs can be beneficial to your loved one and alleviate some of your stress.
For an in-depth list of community resources, read our post Senior Resources- Guide for Caregivers.
9. Create a Good Environment for People with Dementia
When providing home care for dementia patients, ensure you are providing a good environment.
People can benefit from an environment that has the following:
- Safety: Extra safety measures are usually needed. This may include large reminder signs, such as ‘remember to turn the stove off”. Timers on stoves or electrical equipment can be installed. If you are concerned about wandering, an identification bracelet or necklace may help.
- Familiar Surroundings are usually helpful for people with dementia. Moving to another home, rearranging furniture, or sometimes even painting a room or getting new furniture may be disruptive.
- Routines, for example, for eating, sleeping, and bathing, can provide a sense of stability. Having regular contact with the same people can also be helpful.
- Help with orientation like a large calendar, rooms with good lighting, a visible clock, and a night light may help one keep orientated to time and place. Also, frequent comments reminding them of where they are and what is going on may be helpful as well.
Dementia Caregivers: Home Care for Dementia Patients
Caregiver Duties and Responsibilities
Dementia care includes not only physically helping your loved one but also managing the mental and emotional aspects of dementia.
In fact, it can be an emotional rollercoaster watching their cognitive abilities decline and memory fade.
The cognitive decline affects every area of the senior’s life, increasing caregiver responsibilities and making personalized care that much more important.
Every dementia case is unique to those involved. It is a progressive disease, meaning the signs and symptoms of dementia start slowly but gradually get worse.
10 Common Duties and Responsibilities of a Family Caregiver
Dementia care duties increase as the disease progresses. Some dementia caregiver duties commonly required when caring for a loved one with dementia or Alzheimer’s disease includes:
1. Physical Care
Seniors may need help showering, getting dressed, toileting, shaving and brushing their teeth.
Dementia caregivers provide physical care which may include help walking and getting around the house, getting to the bathroom, and going to appointments.
Depending on their physical condition, seniors may need to be lifted or help transferring. For example, from the bed to a chair or to the toilet.
2. Meal Preparation and Grocery Shopping
Seniors may not be able to prepare meals, and for some it may be unsafe. They may need prompting or help eating.
Seniors may need help doing laundry and cleaning the house.
4. Business and Finances
Seniors will likely need help paying bills and managing finances.
It is a good idea to discuss a power of attorney early on. It is important to have the appropriate legal documents in place while your loved one has capacity to make decisions.
For a detailed discussion about power of attorney, read our blog post: Power of Attorney: The Complete Guide 2021.
5. Socialization and Companionship
Commonly seniors experience isolation and loneliness. Dementia caregivers provide companionship and emotional strength for their loved one.
6. Medical Care and Appointments
It is a good idea to gain as much knowledge about your loved one’s condition as you can, so you can manage them better and prepare for any future challenges.
This also includes making appointments and going to appointments. Being organized and prepared for health care visits can make a world of difference.
When talking with the provider, giving them specific health information is helpful. Additionally, asking clear questions will make the most of your time and help you better understand the treatment plan.
For more information about preparing for a doctor’s visit, read our blog post Caregiver Guide: Preparing Health Information for Medical Appointments
Medication management is also important. Medication management means making sure they take their medications as prescribed, get refills and watch for side effects.
7. Advance Care Planning
Advance care planning means putting health care preferences in writing so family and health care providers know what type of care you want if you are unable to communicate.
Commonly, people put their wishes in a legal document, like an advance directive.
For additional information about advance care planning, please read our post: Advance Care Planning: The Complete Guide 2021
Discussions about end-of-life care can be stressful and sensitive for both the caregiver and care recipient.
Family dementia caregivers face the challenge of staying open to their loved one’s wishes while staying objective.
To read more about advance care planning and information on preparing for sensitive discussions, read our blog post Sensitive Discussions About End of Life Care
8. Recognizing Caregiver Stress
It is essential to understand how stress may impact you as a caregiver.
It is helpful to recognize how stress can harm your body and how to manage stress.
For comprehensive information about stress and how it impacts your body, and other important information about stress for caregivers, read our post What is Stress?
9. Dementia Caregiver Self-Care
Caregiver self-care is critical for dementia caregivers so they stay healthy and continue providing care without burning out from stress and exhaustion.
We have all heard the research identifying the benefits of eating healthy, exercising, getting enough sleep, and staying hydrated. Self care is more than that.
10. Know your Resources – Where to Find Help
Caring for a loved one with dementia gets challenging. There may be some resources available that could help you.
For example, meal delivery programs, caregiver support services, health insurance consultations, visiting nurses, or respite care programs.
These programs can benefit your loved one and may also alleviate some of your stress.
For an in-depth list and help finding community resources, read our blog post Senior Resources- Guide for Caregivers.
The Alzheimer’s Association
The Alzheimer’s Association is an great place to find information and resources about all Dementias.
They provide medical information along with an abundance of information for caregivers.
They also have an online community and virtual support groups.
Additionally, the Alzheimer’s Association has a 24/7 telephone help line (800) 272-3900.
Thinking About Hiring a Caregiver? Our post Hiring a Caregiver for In Home Help reviews the pros and cons of using an agency, common interview questions, and other useful information.
We have a FREE downloadable caregiver job description template that may be helpful if you are thinking of hiring an in-home caregiver.
Additionally, check out our FREE downloadable caregiver checklist that helps ensure the important things get done.
Read our post Understanding Home Health Care to get comprehensive information about the services usually provided for those in need of home care.
For more information about caregiver duties, read our comprehensive blog post: Caregiver Duties and Responsibilities.
Dementia care becomes more challenging as the disease advances. Understanding the signs and symptoms of dementia, the disease progression and how to manage your loved one is critical through this journey. Recognizing caregiver stress and implementing self-care will help your physical and emotional well-being. Dementia caregivers should look into the available resources in your community, which can benefit you and your loved one.