Being a Dementia Caregiver
A blessing or a burden? Caregiving is a journey that millions of families begin making every year.
Caregiving can be a difficult task — doubly so when taking care of a loved one with Alzheimer’s or dementia. Millions of Americans find themselves in a predicament where they suddenly hold the responsibility of caring for their aging parents with very little knowledge of how to navigate it. Each experience is unique, depending on the individual and the severity of the disease.
To help caregivers understand dementia and its frequently associated behaviors, we have put together a guide. Below you will find quick advice on caring for dementia patients that will help you feel less stressed, increase your knowledge, and broaden your skill set.
What is Dementia?
Dementia, unlike other illnesses, is not a single disease; rather, it is an umbrella term used to represent a variety of symptoms linked to loss of memory and other crucial functions that impact daily life and make it difficult or impossible to accomplish basic tasks.
There are several different varieties of dementia, but we will discuss Alzheimer’s disease as it is the most common.
By 2050, it is anticipated that over 10 million individuals in U.S. will be affected by Alzheimer’s disease, which accounts for 60–80% of dementia cases.
Alzheimer’s disease progresses in stages. Being able to recognize and accommodate each one is incredibly helpful in guiding caregivers towards better understanding the behaviors associated with dementia. The three primary phases of dementia are broken down here.
Early-Stage Dementia
The affected person will likely still be independent: driving, living alone, etc. Symptoms may be difficult to spot, if present at all. Small warning signs may begin to appear, such as forgetting names, struggling to recall the words of familiar objects, making duplicate payments, or having trouble performing routine tasks.
What to anticipate at this stage
You play the role of care companion more than a caregiver. Your parent, relative, spouse, or partner is still capable of getting dressed, taking a shower, and carrying out regular activities. But they might want assistance recalling names and words, keeping appointments, and knowing when to take their medication. It may be challenging to decide when or how to lend a hand as sometimes the loved one may be resistant to accept help.
Do not push your help on a reluctant loved one, as it may cause emotional discord in your relationship. Instead engage rest of the family members to start planning for your aging loved one’s care and take time to better understand what may be needed from you as the condition progresses. Evva 360 can also help you prepare for the next steps in your journey.
Make plans and practice throughout this period. Get their wishes for long-term care and your financial situation on the same page. Put their independence first. For example, ask if it’s okay to assist rather than yelling out the answer if your loved one is having problems remembering a term.
Begin organizing a care team, people you and your loved one trust to assist in the future.
People may be in the early stages of dementia for years. Spend as much time as possible with your loved one, and make time for yourself as well. Document memories as they could be useful in future care.
Self-care advice
It’s a good idea to educate yourself on dementia at this time and create a network of medical professionals, local or online support groups, therapists, and friends that can relate to your situation. If you want to be the primary caretaker, consider enlisting the help of friends, neighbors, and family members so you won’t feel trapped when responsibilities begin to compound. You may be pleasantly surprised how others may be able to help you — even if it is once a month.
Moderate-Stage Dementia
The early dementia symptoms will start to get worse at this point. Confusion, more severe memory loss, and a decline in good judgment are all symptoms of Alzheimer’s disease.
What to anticipate at this stage
There are no distinct indicators for each stage of dementia. But your loved one’s condition will progress when more brain nerve cells suffer damage. Both of you may find this to be emotionally taxing.
It represents a loss of freedom and individuality for your loved one. Both bathing and dressing are confusing. They may still be capable physically, but might not remember how.
Your loved one could struggle to remember recent events or keep up with simple conversations. It’s typical to forget to eat, lose the sense of time, and experience difficulty sleeping during this stage. These changes may elicit difficult emotions in your loved one, making them disappointed, angry, or depressed.
Your position will change from care companion to caregiver at this point. If your loved one starts to stray from the house, you’ll take on the roles of driver, chef, and supervisor. You’ll likely start being asked the same questions repeatedly at this point.
Try to be patient with yourself and the circumstances. Get assistance tailored to your needs, such as through the Alzheimer’s Association’s “Caregiver Stress Check,” Alzheimer’s Navigator, and Evva’s training plans on topics including communication, financial planning, and legal preparation.
You must also give each day some structure. Spending more time with your loved one may require you to adjust your life.
There will be some trial and error involved — it takes work to create a daily schedule that truly accommodates both of you.
What activities does your loved one enjoy? What do they excel at? Do they “sunset” or get more agitated or disoriented in the late afternoon and evening? Plan extra time for activities that used to be quick, like eating, getting dressed, and taking a shower. Make sure to allow time for each of you to have unplanned fun.
Self-care advice
Take brief daily and, if possible, 24-hour breaks at least once a week or month. Sometimes, taking a few minutes to take a breath and reorient yourself pays dividends. During these time periods, it is important to clear your mind from your responsibilities and focus on you and things that you would like to do. And remember, you are not alone! If you feel overwhelmed, talk to other caregivers and also rest of the family members about how you are feeling and where you may appreciate their help.
Late-Stage Dementia
People will endure substantial decreases in their physical and cognitive abilities throughout this final stage of dementia. They will lose most or all of their ability to communicate effectively. They will likely still be able to speak, but it will be difficult to understand what they are saying.
What to anticipate at this stage
The age and health of a person and other factors determine how long they live after being diagnosed with Alzheimer’s disease. They typically have a lifespan of 4 to 8 years. But some people live for two decades or longer. The final stage of the disease could last your loved one for a few weeks to several years. This phase could be the most difficult one.
Your loved one will likely struggle to walk. It might be hard for them to get out of bed or use a wheelchair. Moreover, they’re prone to getting sick and taking a long time to get better. Assistance with moving will be frequent, either by you or a caregiver. Enlist in the advice of a nurse or physical therapist.
Expect to clean them, look for sores, note when they use the restroom and clean up after them, and move them around frequently for their own physical health.
Even simple motor skills such as swallowing will require assistance. To prevent dehydration, you might need to spoon-feed them soft foods and ensure they get enough liquids.
Your loved one might be unable to speak or convey their needs at this point. Connecting on whatever level you can is still crucial. Playing their preferred music, seeing pictures, or spending peaceful time together can help.
With quality of life in mind, this is the time to think about full-time care, such as a nursing home or hospice.
Self-care advice
We know that this stage can feel difficult and overwhelming. You may be experiencing loss, anger, guilt, or a combination of it all. Value the precious moments that you have and connect with your loved one in ways that are meaningful to both of you. If your loved one needs admission to a memory care facility, and many will, do not feel guilty or a sense of abandoning them. You can still be there for them, while ensuring you do not burn out or neglect your own health in the process.
Regardless of the stage your loved one is in,
it pays dividends to be patient and take things day by day. Every case of dementia is different, and it will assist you in providing better, higher-quality care if you have the patience to comprehend the behaviors and emotions of the patient. Do you remember the flight safety videos? They encourage passengers to ensure their safety and well-being first before helping others. Similarly, caregivers should take care of their own health, so they can take better care of their loved one.
In the truly late stages, hospice or palliative care are options to consider. Such a support system can be very helpful for the patient and the family. Additionally, this kind of medical help will provide more details about dementia phases and what to get sorted as a person nears the end of their life.
This is a difficult journey for the millions of Americans that go through it. You want to be sure the person with dementia will be cared for, so it pays to have these conversations early and set plans in place for the future. As caregivers, we have been in your shoes and know what it’s like.
That’s why we’ve built Evva Health to guide and look after you every step of your caregiving journey. Learn more at our website, and join us to co-design care assistance accessible to all.
