The Guide to Dementia Caregiving
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Introduction
It can be stressful to learn that someone you love has been diagnosed with dementia. You may be concerned about how they're feeling after the diagnosis or overwhelmed by all of your own emotions, from grief to anger. You may also fear how it will change your loved one and your relationship with them as the disease progresses.
It can be especially stressful if you find yourself in the position of caregiver. For most, this is a new and unfamiliar position, and you likely have a lot of questions and may not know where to start.
This guide walks you through what a dementia diagnosis means, what you might expect during your time as a caregiver, and tips to remember as you go into this experience.
Understanding Dementia
Learning about your loved one's diagnosis is one of the first steps toward reducing some of the stress you may feel as a new caregiver.
About Dementia
Dementia is an umbrella term used to describe a decline in cognitive function, affecting abilities such as memory and reasoning. It's not a disease itself, but rather a word used to encompass all symptoms of cognitive decline from abnormal changes to the brain, which can be caused by a variety of conditions.
It should be noted typical memory loss associated with aging is not included under this umbrella or considered dementia. While old age is a risk factor, dementia is not a normal part of aging.
Dementia vs. Alzheimer's Disease
According to the Alzheimer's Association, Alzheimer's disease makes up 60 to 80 percent of dementia cases. Because of this, many people think 'dementia' and 'Alzheimer's' are synonymous with each other, but that's not the case. All cases of Alzheimer's are dementia cases, but not all dementia cases are Alzheimer's.
Instead, Alzheimer's is one of many types of dementia. The dementia symptoms displayed by those with Alzheimer's, in particular, are caused by complex changes to the brain following cell damage. It's a degenerative brain disease that progresses over time, typically first affecting short term memory and later causing severe confusion and disorientation.
Other types of dementia have different causes and may progress differently. The second most common type of dementia is vascular dementia, which is caused by reduced blood flow in the brain. Other types of dementia include Huntington's disease, Creutzfeldt-Jakob Disease, lewy body dementia, frontotemporal dementia, and mixed dementia.
Sometimes brain changes and symptoms can overlap for different types of dementia, so a doctor might only diagnose someone with dementia and not specify a type.
To learn more about the different types of dementia, the Alzheimer's Association goes in-depth about each here.
7 Stages of Dementia
Stage 1: No Cognitive Decline
People without dementia are considered to be in this stage. They function normally and are mentally healthy.
Stage 2: Very Mild Cognitive Decline
People in this stage experience the minor memory loss typically associated with aging. There are not yet any noticeable symptoms of dementia, but the patient may misplace objects or forget names.
Stage 3: Mild Cognitive Decline
The cognitive decline becomes more noticeable in this stage. People in this stage find it harder to recall words and retain new information. They may perform poorly at work or in social situations.
Stage 4: Moderate Cognitive Decline
This is considered early-stage dementia, and a physician can easily detect cognitive problems. The patient may begin to forget more personal knowledge, experience difficulty concentrating, and have trouble with tasks such as managing finances and traveling to familiar locations.
Stage 5: Moderately Severe Cognitive Decline
This is considered mid-stage dementia, and it is at this stage that the patient needs some assistance with daily living, such as choosing proper clothing to wear. They may be unable to recall some relevant facts, such as an address or the names of close family members such as grandchildren. Still, they can remember significant facts such as their name. They may also experience some disorientation to time or place.
Stage 6: Severe Cognitive Decline
This is still considered mid-stage dementia, and those at this stage require help with many activities of daily living. They begin to occasionally forget significant facts such as the name of their spouse and are mostly unaware of recent events. Still, they can recall their name. Patients may exhibit delusional behavior, obsessive behavior, anxiety or agitation, or a loss of willpower.
Stage 7: Very Severe Cognitive Decline
This is considered late-stage dementia. Those in this stage have lost the ability to communicate and often lose psychomotor skills, such as the ability to walk. They also require assistance with most activities of daily living.
There are other scales used to describe stages of dementia that are less common. Dementia Care Central provides information on those scales as well as more information on GDS.
What to Expect
The responsibilities a caregiver may have vary depending on the stage of the dementia. Below are the types of care you can expect to provide during each stage.
EARLY-STAGE DEMENTIA (STAGE 4)
During the early stages of dementia, the person receiving care is still mostly independent and capable of basic self-care. However, being diagnosed with dementia can be scary, and what they need most during this time is your love and support as they come to terms with their diagnosis.
Some other tasks you may assist with include:
- Planning for the future
- Particularly stressful or frustrating tasks, such as grocery shopping or money management
- Organization and planning a daily schedule
- Keeping track of medication and appointments
- Preparing healthy meals and encouraging exercise
During this stage, it's best to encourage them to live as independently as possible, but help them with anything they may begin to struggle with.
Mid-Stage Dementia (Stages 5-6)
During the middle stages of dementia, the sufferer's cognitive decline and memory loss become more severe. They begin to lose their ability to care for themselves independently, begin to have trouble communicating, and more often become confused, paranoid, anxious, and agitated. They may also start to act less like themselves, potentially becoming sleepless, wandering, or having outbursts.
This is typically the longest stage of dementia and can last years. Patience is key as you adjust to these changes and create a new routine for you and your loved one.
Some tasks you may start to assist with include:
- Transportation. Someone in the middle stages of dementia should no longer be driving themselves to appointments, activities, etc.
- Taking safety precautions and preventing wandering
- Eating, dressing, and grooming
- Calmly and briefly reminding them of facts, answering questions, or correcting mistakes
Like in the early stages, you should still try to encourage them to live as independently as possible. Consider their abilities and help when needed.
Late-Stage Dementia (Stage 7)
During late-stage dementia, the cognitive decline progresses to a point of severity where your loved one will need extensive care. At this point in the illness, they will need full-time help with self-care, eating, and mobility. Over time, they may lose their ability to walk and may become incontinent.
The focus during this stage is primarily on helping your loved one maintain the best quality of life possible.
Some tasks you may start to assist with include:
- Helping them continue to connect with the world through their senses by playing their favorite music, reading parts of a book they once enjoyed, sitting outside with them, etc.
- Adapting foods to be easier to swallow and feeding, if they are unable to feed themselves
- Dressing, grooming and going to the bathroom
- Relieving pressure and preventing skin breakdown if your loved one becomes bedridden
- Maintaining good hygiene and preventing infections
Since a person who has late-stage dementia needs around-the-clock care, it can be hard for care to continue at home. During this stage, many families face the tough decision of moving their loved one into a care facility or hospice to receive the best care possible.
For more information on planning for and deciding on end-of-life care, our Ultimate Guide to Caregiving goes into more detail.
Treatments
For most cases of dementia, there are no cures for or even ways to slow the progression of the disease. However, there are a variety of treatments that can help ease the symptoms of dementia, including medication for memory, behavioral issues, and sleep disturbances.
The type of medication prescribed for memory will largely depend on the stage of dementia. When it comes to medication for behavioral issues or sleep, a doctor will typically prescribe these medications if non-drug methods are unable to treat the symptoms. Some non-drug methods may include changing the person's routine or providing them with additional means of comfort.
Clinical Trials
There is always research being done on possible treatments for dementia. You or your loved one may find it beneficial for them to partake in a clinical trial. Clinical trials are research studies done to determine the safety and effectiveness of new treatments. Depending on the trial, these treatments may be to ease symptoms or to slow or stop the disease's progression.
Not only do clinical trials allow your loved one to receive treatments unavailable to the public, but they also allow them to help scientists and researchers improve dementia treatments for everyone.
The criteria to participate, such as the age of the participant or stage of the participant's disease, varies trial by trial. Ultimately, whether or not someone participates in a clinical trial depends on the informed consent of the participant. A caregiver can only decide to enroll their loved one in a clinical trial if their loved one is unable to make an informed decision. The patient also must not have noted in their advance directive that they did not wish to be considered for clinical trials.
Tips for Dementia Caregiving
Create a Daily Routine
Keeping up with a daily routine can help you stay organized and allow you to fully engage with your loved one without worry that you forgot to do something. This plan should include everything, from when to wake up and go to bed, to personal care such as bathing and getting dressed, food preparation and meals, medication, activities, and breaks for you.
A daily routine can also be helpful for the person with dementia. Regular times for meals and activities can keep them from becoming confused. It can also allow you to have written reminders of each activity's time. It can also help them maintain a regular sleep schedule and prevent sleeplessness or sundowning.
When creating a routine, consider what your loved one's routine was before dementia. Did they bathe in the morning or at night? What were some of their favorite things to do or their favorite foods? Considering these things can help limit confusion and keep them engaged. On the other hand, you will also want to consider leaving time open for spontaneous activities, such as meeting with a friend.
Be aware that this routine can and will change. Some activities might not work as well as others, or you may find that you have planned too many things than time allows. The routine will also change as your loved one's dementia progresses, and they need more assistance.
Keep your loved one engaged with activities
As stated, you will want to include different activities in your day-to-day routine. These activities can be anything that the person with dementia is capable of, such as:
- Creating art or doing crafts
- Playing or listening to music
- Reading a book or the newspaper
- Or watching TV
It can also include involving them in chores around the house, such as setting the table or drying the dishes.
Having planned activities keeps the person with dementia engaged and can help reduce agitation and irritability. You will want to keep their interests, skills, and abilities in mind when choosing the activities. Consider what they already do without prompting throughout the day, what they used to enjoy doing, and what they may struggle with now that they have dementia.
As they partake in the activities you plan for them, continue to keep these things in mind. Ultimately, the key goal is their enjoyment of the activity. Pay attention to what they enjoy doing most and what might bore or irritate them. You will also want to keep an eye out for activities they may struggle with, or that might tire them out.
The best activities for your loved one can differ throughout the day or change over time as the disease progresses. You may have to help more with the activity, make adjustments to make it more doable or choose a different activity entirely. The most important thing is to pay attention and adjust accordingly.
Be prepared for changes in communication
As dementia progresses and affects your loved one's ability to communicate, the way you interact with them will have to change too. Be patient with them if they lose their train of thought, have difficulty finding the right word or stringing sentences together, or forget the names of familiar objects.
Don't assume anything about their ability to communicate; continue to include them in conversations and speak directly to them. You may feel inclined to interrupt and help them find the right word or finish their sentence, but this can be disrespectful. Instead, offer reassurance and give them time to express themselves. Only help if they ask for it.
As the disease progresses to mid-stage dementia, and they struggle more with communicating, patience becomes even more critical. Speak slowly and be clear and straightforward in any instructions for tasks or questions you have for them. Continue giving them time to express themselves, and encourage rather than criticizing or correcting them. Try not to overwhelm them with too much information or too many questions at once.
In late-stage dementia, non-verbal communication may be easiest for your loved one. Pay attention to their body language and any physical cues, such as gestures. You may also be able to best communicate with them through their senses, such as sight, smell, or touch. Above all, continue to take your loved one's emotions into account and treat them with respect during this stage.
Take care of yourself, too
The more your loved one's dementia progresses, the more involved you will be in their day-to-day life and in taking care of them. This can be draining and cause you to become burnt out, and it's important not to let your health fall to the wayside.
Try to schedule time in your routine to take a break from caregiving. Do something just for you, such as working out, meditating, or partaking in a hobby you enjoy. Be sure to have a support system in place to talk to about topics both related and unrelated to caregiving, whether that be friends, family, a therapist, or a support group.
You may even consider giving yourself a break and letting someone else support you by taking on the role of caregiver for a day or two. Know that you are not alone in this, and if someone offers to help, you're allowed to accept. Don't be afraid to ask for help, either.
While your loved one needs to be taken care of, you deserve to take care of yourself too. Your health still matters.
For more information on caregiving and taking care of yourself as a caregiver, check out our Ultimate Guide to Caregiving.
About the Author
Stephanie Schwarten is a freelance writer and editor with a Bachelors degree in Professional Writing. She specializes in content marketing as well as both developmental and copy editing.
About Carex Health Brands
Carex is your one-stop shop for home medical equipment and for products that assist caregivers with providing the best possible support and care for their loved ones. Carex Health Brands has been the branded leader in in-home, self-care medical products for over 35 years. Our goal is to improve the lives of our customers by bring them quality products that bring dignity back to their lives. With our three nationally distributed brands, Carex Health Brands serves national, regional and independent food, drug and mass retailers along with wholesalers, distributors and medical dealers.