Having a better understanding of dementia and Alzheimer’s disease takes away much of the worry when you notice that someone that you love and care for is experiencing symptoms. Loss of memory and confusion are some of the early warning signs that alert you to a possible onset of dementia or Alzheimer’s disease.
Our society has many myths around people needing Alzheimer’s care [i]. Many people affected by symptoms of Alzheimer’s and dementia can function well with some assistance and enjoy many of the activities that they always have.
Two risk factors for Alzheimer’s disease are age and genetics, according to the National Institute on Aging [ii]. People over the age of 85 have the highest risk of contracting the disease. Genetic studies have shown that some families have a genetic predisposition for Alzheimer’s disease for younger onset or older onset Alzheimer’s disease. While certain populations of people are more prone to getting Alzheimer’s disease, everyone is a candidate for getting Alzheimer’s.
While the level of care is most intensive during the late stage of the disease, there are some beneficial things that you can do during the early stage of the disease. The early stage of Alzheimer’s disease is the best time to learn about the various stages to come and how you and your loved one will successfully navigate them. While having discussions about intensive care needs and end-of-life matters isn’t pleasant, it’s important to have those discussions while the person that has dementia can help make decisions about late stage dementia home care and their end-of-life wishes.
The early stage is also the best time to learn about what it means for caregivers as they prepare to take care of a loved one with Alzheimer’s disease. Part of this education includes care for the caregiver.
Use this guide to better understand the progression of dementia and Alzheimer’s disease and how to hire help for Alzheimer’s care and dementia home care.
Dementia and Alzheimer’s Disease: Aren’t They the Same Thing?
Until someone has a personal relationship with someone who receives a diagnosis of dementia or Alzheimer’s disease, it’s common for people to think of the terms interchangeably. In fact, the terms dementia and Alzheimer’s disease are related, but they are distinctly different in several ways.
Many of the symptoms of dementia and Alzheimer’s disease are much the same. Dementia has different causes than Alzheimer’s. It’s important to recognize the differences between these conditions because physicians prescribe a course of treatment for dementia care according to the cause of the condition. Getting the right course of treatment makes a world of difference for anyone that has either of these conditions, as well as those who care for them.
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Dementia Is a Syndrome
Dementia is a syndrome, not a disease. Syndromes have a set of signs and symptoms that characterize a condition. A person who has symptoms of dementia may have one or more symptoms including the impact on memory, thought processes, or communication. Dementia symptoms often make it difficult for people to perform regular daily duties.
Dementia is common in populations across the globe. According to the World Health Organization (WHO) [iii], approximately 47.5 million people in the world have dementia. WHO expects the numbers to rise to 75.6 million by the year 2030.
You might be surprised to learn that dementia is not considered a normal part of aging; although, dementia occurs more often in aging populations. In fact, symptoms of dementia most often affect people over the age of 65. People as young as the age of 30 may need dementia home care.
Causes of Dementia
Symptoms begin when certain brain cells get damaged by disease or other factors. Each condition that causes dementia damages sets of brain cells in different parts of the brain.
It’s possible that people confuse dementia with Alzheimer’s disease because Alzheimer’s is the most common case of dementia. Alzheimer’s is the root cause of approximately 50%-70% of all dementia cases. Lesser percentages of certain other diseases also commonly cause symptoms of dementia like Parkinson’s disease, Huntington’s disease, and vascular diseases. Dementia may have a host of other causes like HIV infections, depression, stroke, chronic drug use, and more.
Treatment for Dementia
There is no cure that prevents dementia. There isn’t even currently a way to stop it from progressing. While there are no existing cures for dementia, you may be able to find dementia home care if you can discover the cause of the symptoms and then treat the symptoms.
Certain medications like cholinesterase inhibitors improve the symptoms of dementia, particularly in cases of Parkinson’s disease and Alzheimer’s disease.
The most common course of treatment for people with symptoms of dementia is taking a behavioral approach. Studies show that treatments like occupational therapy and in-home based assistance greatly improved the quality of life for people with dementia [iv]. These treatments also eased the burden for their caregivers.
Alzheimer’s Is a Disease
The medical community classifies Alzheimer’s as a disease. Alzheimer’s disease is similar to dementia in two ways—it affects memory, language, and thought processing, and it gets worse over time. Alzheimer’s disease is also similar to dementia in that it most often affects people over 65, and it isn’t considered a normal part of aging.
In reviewing the list that follows, you’ll notice that many of the symptoms of Alzheimer’s disease mirror the symptoms of dementia. People with Alzheimer’s disease may have one or more of the following symptoms:
- Failing short-term memory
- Impaired judgment
- Behavioral changes
- Difficulty speaking, swallowing and/or walking
Hiring professional caregivers will help you see these symptoms as a normal progression of the disease. You can count on them to help care for the person with the disease and to help and support you as the caregiver, as well.
Here’s more about what you can expect during various stages of Alzheimer’s disease.
Caring for Alzheimer’s Disease During Every Stage
After you’ve had some initial exposure to the symptoms of Alzheimer disease, you’ll learn the ebb and flow of when to offer help and when to let the individual with Alzheimer’s enjoy some independence. Over time, you’ll gain confidence in your abilities as a caregiver.
As the symptoms begin to increase in frequency and duration, it’s not uncommon for many caregivers to revisit their original feelings of fear and inadequacy. The reality is that caregivers will ultimately reach their limits in their ability to care for their loved one alone as the disease progresses. It’s tempting to try to provide care on your own, but continuing to give care for someone with Alzheimer’s disease when you are in a state of exhaustion poses risks for the person who needs care and risks for the caregiver.
Studies Prove Caregiver Stress and Exhaustion
Psychologist, Peter Vitaliano, and his colleagues evaluated 23 studies on senior caregiving and found they had higher stress levels and decreased levels of immunities than non-caregivers [v]. These physiological changes can lead to other health conditions like high blood pressure, hypertension, diabetes, and a weakened immunological system.
Senior caregivers that take the time to learn about the stages of Alzheimer’s disease better position themselves to accept and cope with the changes that come with a progression of the disease. Understanding the stages of Alzheimer’s disease will alert you to the time when you need to ask for help in providing care at home or in another setting.
Adjusting Caregiving During Stages of Alzheimer’s
Alzheimer’s disease progresses through three distinct stages—early stage, mid stage, and late stage. Progression through each stage varies substantially from person to person. Any of the stages can last for several years. The Alzheimer’s Association states that individuals with Alzheimer’s continue to live from four to eight years on average after they get diagnosed [vi]. Those affected by Alzheimer’s disease can live up to 20 years.
Helpful Tips for Caregiving During the Early Stage
The early stage of Alzheimer’s is also an early stage for caregivers to learn about their roles in caring for someone with the disease. This is the best time to start conversations with the person needing care about legal and financial matters, as well as short and long-term planning for care.
Early stage caregiver support extends beyond spouses, partners and close family members. Primary caregivers should consider reaching out to friends, neighbors, extended family members, and others on the community for help and support. As the disease progresses, these relationships become important parts of caregiving.
Watching for Signs and Symptoms
During the early stage of the disease, symptoms are fairly mild. People with the disease have trouble retrieving the right words from their memory banks. They also more easily forget names of people they’ve just met and forget things they just read. They have trouble with planning and organizing things and it seems they are always losing things. Performing tasks in social or work settings starts to become challenging because of the expectations and pressure that they feel outside of their homes.
Giving care becomes increasingly challenging for the caregiver as well, but there are a lot of steps that you can take to help make situations manageable.
Where to Find Educational Resources
Read online and print articles on Alzheimer’s disease and dementia. Start the process of educating yourself about the symptoms of Alzheimer’s disease in various stages and gain insight and learning from caregivers who walked the path before you. There are many websites that give good information about caring for a person with Alzheimer’s disease. Here is a list to get you started:
- Alzheimer’s Association [vii]
- National Institute on Aging [viii]
- Wisconsin’s Alzheimer’s Institute [ix]
- Mayo Clinic [x]
- S. Department of Health and Human Services [xi]
- Psychology Today [xii]
- AARP [xiii]
- Healthline [xiv]
- John Hopkins Medicine [xv]
- Centers for Disease Control and Prevention [xvi]
You’ll find many websites on this topic that are overflowing with information on Alzheimer’s care. Keep searching until you find the information you need.
Searching for Medical Help
Find a doctor that specializes in geriatrics, neurology, or clinical psychiatry, because these specialties are typically trained in dementia and Alzheimer’s disease. They will most likely be able to share a local network of resources with you. If you can’t find a doctor you trust through your primary care physician’s referral process, try searching at the website for the Fisher Center for Alzheimer’s Research Foundation [xvii]. Use the site to find resources for physicians, nursing facilities, specialists, and other services for the aging population in your geographical area.
Learning About Medications
As a caregiver, a prudent step that you can take during the early stage is to begin educating yourself and your loved one about the types of medications that treat cognitive symptoms. For many people afflicted with Alzheimer’s disease, medications buy the person 6-12 months before symptoms worsen for about 50% of the people [xviii}who choose to take them.
The U.S. Food and Drug Administration (FDA) approved two types of drugs to treat symptoms that affect memory, thinking, language, judgement, and reasoning [xix]. They are cholinesterase inhibitors and memantine. You will recognize cholinesterase drugs by the brand names Aricept, Exelon, and Razadyne. The brand for memantine is Namenda.
Alzheimer’s disease causes brain cells to die, which breaks down communication between them. The chemicals in these drugs won’t stop the progression of cell damage, but they lend some assistance to the cells that perform communication duties. Medications may help decrease the symptoms for short periods of time.
The Alzheimer patient may consider taking medications to treat other symptoms of the disease like medications for insomnia or depression. High doses of vitamin E sometimes also help. Some patients find relief from symptoms through alternative remedies like coconut oil or fish oil.
Have a discussion with the patient’s doctor about whether any of these medications or combinations of medications and vitamins may improve symptoms.
The doctor will probably ask if the patient takes any other medications before prescribing medications to treat Alzheimer’s disease. It’s wise to make sure that you have this discussion including any over-the-counter medications that the Alzheimer patient takes to prevent any dangerous or unpleasant side effects. It’s also a good idea to discuss medications with the patient’s pharmacist.
Joining an Alzheimer’s Support Group
Did you know that senior caregivers can get help and support any time of day or night by joining an online support forum or online chat? Caregivers can join ALZConnected, which has over 9,000 registered members across the country [xx]. Browse the topics for the symptoms that challenge you and your loved one the most and find out how other caregivers are learning to cope.
The Alzheimer Association also offers support groups led by professionals for caregivers and others who deal with Alzheimer’s disease [xxi]. The association also trains peer caregivers to facilitate caregiver support groups for their other caregivers. The Alzheimer’s Association also has specialized groups for children, people with younger-onset Alzheimer’s disease, and early-stage Alzheimer’s. Use their online search engine to find a group anywhere in the United States. The group will help connect you with other programs, services, and educational workshops in the area.
Helpful Tips for Caregiving During the Middle Stage
Expect for symptoms to worsen during the middle stage of the disease. As the disease damages more brain cells, the affected person has increasing difficulty expressing thoughts and performing routine tasks [xxii]. Changes in behavior are sometimes the most difficult symptoms for caregivers to accept. There will be good days and bad days—good moments and bad moments. The relationship between the individual with Alzheimer’s disease and the caregiver changes in ways that the person becomes increasingly more dependent upon the caregiver.
You will need to rely more heavily on your resources as the demands of caregiving increase. This is often the time that caregivers begin to look for in-home professional caregiving help. Do you remember all of those notes that you took during the early stage of Alzheimer’s? This is the time to dig them out and begin exploring them.
The middle stage of Alzheimer’s can last for many years. You’ll find that by getting even a little assistance in caregiving or respite care can make a very big difference during this stage to prevent caregiver exhaustion and burnout. Here’s what you can expect the symptoms to look like during the middle stage and some steps you can take to provide the best care during this stage It’s also important to take some steps to take care of yourself during this stage as well.
Worsening Symptoms During Middle Stage Alzheimer’s
It’s common for symptoms to worsen on a visible level during this stage. The person may be having noticeable trouble with daily tasks like bathing, eating, and getting dressed. They may perform the same tasks repeatedly and wander aimlessly. It’s also common for the person’s sleep patterns to change.
Symptoms of the disease cause the person to become angry, frustrated, or act much differently than they had all their lives. Don’t be surprised if the disease causes the person to feel depressed, anxious or irritable. These feelings sometimes lead to physical or verbal outbursts in some people.
Be Aware of Medical Issues
Just like with anyone else, people with Alzheimer’s disease develop medical issues. Because of the diminished ability to communicate, the person with Alzheimer’s disease may not be able to tell their caregiver that they are in pain or not feeling well. This is just one of the reasons that it helps to bring in a professional aide or caregiver with experience caring for people with Alzheimer’s, at least for a few hours of the day. Professionals will be aware that changes could signal a need for medical attention.
When you pay close attention, you may be able to detect signs that the person isn’t well. Watch for physical signs like their face grimacing in pain or rubbing or holding part of the body. The person might not show any physical signs at all, but you may notice a marked change in behavior like increased yelling or striking out.
Making Changes at Home to Make It Safe
As symptoms increase, you may feel like all you do is follow the person around the house all day trying to keep them safe. Making just a few changes can make a world of difference, but it can be quite overwhelming to know where to start. Think of making changes from the perspective of removing obvious hazards and introducing new features to help the person live safely at home.
Social Work Today magazine gives some great tips from the Alzheimer’s Association for maintaining safety and fostering independence with a zone-by-zone inspection of the home and tips to make it more senior friendly [xxiii].
- Kitchen-hide knives and cleaning supplies. Disconnect the garbage disposal and store away all small kitchen appliances. Unplug the microwave oven. Remove the knobs from the stove and connect the stove to a hidden gas valve or a discreetly placed electric switch. Keep the refrigerator cleaned out except for what you really need. Keep a fire extinguisher handy and make sure it works, but keep it out of reach from the person you care for.
- Bathroom-lower the water temperature to 120˚F or less. Raise the toilet seat and add grab bars in the bathroom and shower. Remove bathroom throw rugs to prevent falls. Add textured stickers to slippery floors and tubs. Remove locks from the bathroom door. Remove medicines and other dangerous substances from the medicine cabinet, as well as things like tweezers and small scissors.
- Bedroom-remove electric blankets and monitor the temperature of heating pads if the person needs them. Install nightlights to prevent falling if the person gets up in the night or starts wandering.
- Garage-lock up power tools like drills and saws. Store sharp tools like axes, picks, and rakes in a locked cabinet. Limit the person’s access to motorized equipment like lawnmowers, weed wackers, leaf blowers, and snow blowers. Keep poisonous chemicals, paint, fertilizers, and auto care solutions safely out of reach.
- All household spaces-disguise outdoor locks or install dead bolts. Remove loose rugs or tape them down. Add colored stickers or signs to large windows or glass doors. Remove poisonous house plants. Keep areas of the home well-lit. Keep household traffic patterns clear of clutter and debris. Remove or lock up guns or other weapons.
- Outdoors-disconnect propane tanks from grills and make sure fenced yard areas are secure. Make sure they can’t access car keys if they cannot drive safely.
Global Positioning Systems (GPS) for Tracking Wandering
Technology has been moving so quickly that many seniors feel as though it has passed them by. In fact, the later stage of life is one of the best times to take advantage of technology. Manufacturers of global positioning systems market their products to people that need supervision and accountability. Teens and seniors make up the vast majority of their target populations.
Being able to track the whereabouts of a person with dementia alleviates much of the worry and concern for senior caregivers over the whereabouts of the person they are caring for. How do these devices work?
Some of the products work by strapping a transmitter to the senior’s body or placing it inside a shoe or other clothing. When the senior wanders past a certain radius, the device alerts either a locator service of the caregiver so they can track the person down and bring them safely back home. Caregivers who are subscribers of these systems typically use a smartphone or computer to track the person’s geographical location. Some products also have an alarm that the senior can use to call for help if they fall or need assistance.
Getting In-Home Help for the Alzheimer’s Patient
While many family members are willing to provide care for a spouse or parent with Alzheimer’s disease or dementia, life’s circumstances often make it challenging for that to happen. When the primary caregiver has to work to maintain their own livelihood, and extended family members all reside out of town, providing full time care isn’t always an option.
During the middle and late stages of Alzheimer’s, you may want to hire caregiver assistance for the times you are not available or respite care to give you a much needed break.
Think about hiring professional assistance in terms of the number of hours and times of day that you need the most help. You can hire professional caregivers for the elderly part-time or full-time. Be flexible and know that they will help whether it’s for a brief or extended period of time.
Should I Contact a Senior Care Agency or Hire Independently?
The answer to whether you should hire a senior caregiver through an agency or independently is a personal one. There are pros and cons to doing it either way. Regardless of which choice you make, it’s important to monitor the caregiver to make sure the individual with Alzheimer’s disease is safe and cared for. Let’s look at the pros and cons of agency care first.
Pros and Cons of Contracting with a Senior Care Agency
A senior care agency takes care of much of the administrative duties with regard to hiring senior care, like withholding taxes and worker’s compensation and other insurance matters. They provide background checks and investigate the references of caregivers they provide. A senior agency will properly vet candidates to make sure they are properly trained. Agencies have bonding to protect against any damages that come up surrounding their services. One of the best things about hiring a senior care agency is that they will provide a substitute worker if the regular worker cannot arrive for duty. This can be a huge relief for family caregivers that have difficulty taking off work to fill in for workers that no-show.
Using an agency isn’t always the best solution for some seniors. Many individuals with Alzheimer’s disease are less symptomatic when things are familiar and they have solid routines. While you have the assurance that someone will always be there to provide care, you have less input regarding who is providing care. Several different workers may arrive which makes it hard for some patients to form a trusting bond. If cost is a consideration, you will pay a bit more for hiring an agency because of their administration costs.
Pros and Cons of Hiring a Private Caregiver
What if you decide to hire a senior care agency and find that they are full or have a waiting list? Perhaps the agency fees are higher than what you can afford. These are a couple of reasons that you might consider hiring a caregiver privately. You may also have gotten a highly-valued referral from a friend or relative.
If you decide to hire someone privately, be aware that you need to perform your own background checks, vet the applicants, and be responsible for all employee tax records, payroll records, and tax withholding. Due to the risky nature of Alzheimer’s and caregiving in general, you’ll also need to provide insurance to cover any potential job-related incidents that might surface.
The biggest downfall to hiring a caregiver independently is that not all independent caregivers are reliable. If the caregiver doesn’t come to work for whatever reason, you’re on your own to fill the gap.
Adult Day Care Programs
If your loved one doesn’t need full-time care during the middle stage of Alzheimer’s disease, you might find caregiver help at an Adult Day Care Program. Medicaid covers the costs of some adult day programs, which could help your budget as well. This is a good option for family members that need to work during the day and are willing to provide care in the evenings and overnight.
The type of adult care varies by state and region. Adult day care programs typically fall into three classifications:
- Social adult day care (ADC OR ADS)-provides non-medical care and supervision. This type of program typically provides nutritious meals, socialization, and adult activities.
- Adult day health care (ADHC)-employs some combination of nurses, occupational therapists, and speech therapists. They administer medications and help with activities of daily living, in addition to providing meal and recreational activities.
- Specialized adult day care-this level of care is sometimes referred to as Alzheimer’s day care or day treatment. In addition to medical and personal care, this type of program places additional focus on preventing wandering and addressing behavioral challenges.
Helpful Tips for Caregiving During the Late Stage
Symptoms of dementia increase substantially during the late stage of the disease. The person may forget about life-sustaining activities like eating and sleeping. Caregivers need to make sure they eat regular meals and supervise them in case they have trouble swallowing. Individuals in the late stage of Alzheimer’s disease will likely need help with personal care. They may not even be able to walk or talk. Because of the Alzheimer’s patient’s limited ability to communicate, they are especially vulnerable to infections and other medical concerns like pneumonia.
For most people living life during the late stage of Alzheimer’s disease, it’s usually unrealistic for one caregiver to fulfill all the demands of full time care around the clock. This is the most important time for caregivers to have a willingness to accept outside help. Fortunately, there are several options that can help like full-time in-home care, facility care, and hospice. Let’s examine what each of these options look like.
24/7 In-Home Alzheimer’s Care and Primary Caregiver Role Changes
If you discussed the most preferred care arrangements for the late stage of Alzheimer’s in one of the earlier stages of the disease, this is the time to follow through and put those plans into practice. Don’t worry if you missed the pre-planning stage of learning about Alzheimer’s care. You still have good options of how to provide quality care during the late stage of the disease. Here are some late stage caregiving options:
- 24/7 in-home care by a senior care agency
- Rotating shifts of private caregivers
- Care in an Alzheimer’s residential facility
- Hospice care
The late stages of Alzheimer’s typically signal a change in the role of the primary caregiver. At this stage, you will hand more of the daily care over to professionals and focus on helping the person live out their final years with some semblance of dignity and quality of life.
Caregivers of individuals in the late stage of Alzheimer’s disease may be able to connect with their loved one using their senses. There are many meaningful activities that you can enjoy together including listening to music, reading books, looking at photos, and enjoying favorite foods. Using touch is a good way to stay connected. Try rubbing lightly scented lotions into their skin or brushing their hair. Sometimes, it enough to simply be present and enjoy quiet times of sitting together indoors or outdoors. Using the senses is a practical way for finding new ways to deepen the bond between you and someone who needs Alzheimer care.
Making the Change to Alzheimer’s Facility Care
It’s never easy to make the decision about moving a person to a residential facility. When considering whether it’s an appropriate time to admit the senior with Alzheimer’s disease to a specialized facility, it’s important to consider the needs of the individual and the ability of the caregiver to continue providing adequate and appropriate care in the home.
In assessing the needs of the Alzheimer patient, consider whether the individual can truly remain safely in their current home. You’ll also want to evaluate whether the person’s medical or personal care needs are beyond what you can reasonably and safely provide. Finally, consider whether a residential program provides a better structure and base for social interactions than what you currently have in place at home.
Because Alzheimer’s can last for up to 20 years with symptoms increasing in severity, it’s also important to consider the health and well-being of the primary caregiver. Take into account whether the caregiver’s own health is at risk from the stress of caregiving. This also means assessing the emotional toll of caregiving. When caregivers become stressed, irritable, and impatient, or begin to neglect their own life’s work and responsibilities, facility-based care may be a better option.
Remember that admitting the person to a facility doesn’t necessarily mean that the caregiver’s duties are over. Their role just changes to providing support and ensuring quality of life.
The Right Time to Consider Hospice
There are medical rules and regulations that govern the proper time to begin hospice care. Most elderly people have Medicare, which covers hospice care. To qualify for Medicare benefits, the physician must diagnose the person with a life-threatening disease like Alzheimer’s, and they must also determine that the patient has less than six months to live. Hospice care can be provided in many settings, including in the home, at a hospital, at a hospice care facility, or in a nursing home or other facility.
The principle behind hospice care is to focus on allowing people with terminal illnesses to live out their final days with comfort and dignity. Hospice workers have training to work with families to help them stay connected and enhance relationships between them while the person is still alive.
The Outlook for Alzheimer’s Care and Resources for Alzheimer’s Patients
Mayo Clinic points to research that aims at treatments that stop or delay some of the changes in the brain that lead to the progression of Alzheimer’s disease [xxvi]. Future treatments may take a multi-faceted approach to reducing brain cell deterioration and inflammation, similar to treatments for cancer and HIV/AIDS.
Until we have a cure for Alzheimer’s disease and dementia, there are many places where you can find services and assistance in your area. Some good places to start are you state agency on aging, local senior centers, veteran’s administration, and the Alzheimer’s Association [xxvii].
Remember that you have much to gain from the experiences of senior caregivers who have filled the role of caregiver before you. Giving quality of care requires educating yourself about dementia home care and Alzheimer’s care, being flexible to adjust care as needs increase, being willing to accept outside help, and being aware that caregivers also need care for themselves.