Caring for Someone with Alzheimer’s Disease and For Yourself as Caregiver
July 14, 2020
If there is one truth about knowing and caring for someone with Alzheimer’s disease, it is that it is difficult. Watching someone you know and love change can be heartbreaking.
According to the Alzheimer’s Association more than 16 million people in the United States are caring for someone who has Alzheimer’s or dementia. The challenge of caring for someone with either condition comes with many emotions and a kind of stress that few can ever understand unless they themselves are coping with the same situation.
In this article we will look at the difference between Alzheimer’s disease and dementia, offer some tips on resources to turn to for support and information, and discuss ways that caregivers can take care of their own health and wellbeing during these challenging years.
What is the Difference between Alzheimer’s disease and Dementia?
It is not uncommon to get the two conditions confused, as one may present symptoms similar to the other, but they different.
Dementia is an overall termed used to describe a set of symptoms that may be caused by different things and not just one disease. For example, Huntington’s Disease, Parkinson’s Disease, and even certain drug interactions or vitamin deficiencies can cause symptoms of dementia such as impaired thinking or poor memory. Once the cause of dementia is discovered an appropriate treatment plan can be implemented. The National Institute on Aging says dementia is a brain disorder affecting communication and daily performance of activities, while Alzheimer’s Disease affects the part of the brain that control memory, language and thoughts.
Alzheimer’s disease is a degenerative, progressive, irreversible disease. According to the Alzheimer’s Association, Alzheimer’s disease is considered a specific form of dementia with symptoms that may include impaired memory, impaired thought, speech and movement, confusion, and mood changes among other symptoms.
Caregiving for someone with Alzheimer’s Disease
Knowledge is power when it comes to caregiving. The Alzheimer’s Association has a list of the Best Books on Alzheimer’s as a good starting point to help educate yourself about the disease and to help you maintain a realistic and positive attitude.
As stated earlier, Alzheimer’s disease is progressive, and the patient’s needs will change over time, possibly becoming more challenging as the years go by.
At the onset of Alzheimer’s disease support is the main thing the patient needs. This stage of Alzheimer’s disease may last for several years and the caregiver is considered more of a care partner, since the patient may not need hands-on assistance in this stage. At this stage the patient usually has the ability to make key decisions about their future such as:
- Legal decisions
- Long-term care housing and planning
- Treatment and medication protocols
- Setting up future support services
- Changes to the house or home
It is also at this stage that caregivers should consider their own plans for how they will maintain their own lives, their health, and their mental health during the coming years.
As Alzheimer’s disease progresses the patient will need more caregiving, including hospitalization for more intensive around-the-clock care, including medical assistance. As a caregiver your role now becomes focused on ensuring the safety, dignity and overall proper care of the patient.
Alzheimer’s Disease and Mood Changes
Many people with Alzheimer’s disease struggle with the changes they are going through. Frustration, depression, fear and anxiety can lead to moments of upset and outburst of anger. For the caregiver this can be both frightening and frustrating.
Repetition, delusions, paranoia, and even hallucinations may also occur. As a caregiver your role is to provide comfort, security and reassurance that everything is okay and that the patient is safe and secure.
The emotional toll on a caregiver should never be underestimated. The daily stress and emotions one faces can be difficult.
Caregiver’s Need Care, Too
Because of the emotional toll that caring for a loved one with Alzheimer’s disease can take on a caregiver, it is important for caregivers too take care of themselves.
In a 2016 article in the New York Times entitled “Love and Burnout: Caregivers, Too, Need Care” a man named Chris Donham recalled what it was like dealing with the stress of caregiving for his wife and how it lead to him landing in the emergency room with what he thought was a heart attack. “It turned out to be stress and strain,” said Mr.Donham. “When you’re in the middle of caregiving, you don’t know what caring for yourself means.”
One key truth in the New York Times article is the fact that the American healthcare system is not focused on caregivers, but instead focuses mainly on the patient.
Caregivers need to be able to reach out to find respite, rest, and support. The National Alliance for Caregiving offers a network of caregiving associations and groups to help caregivers find the support and coping resources they need while caring for a loved one.
Reaching out to support groups and local resources for someone to talk to and to find someone to help take over caregiving while you take time away to rest and take care of your own needs is important. Caregiving is not a hobby or something that one takes on for a day or two. Caregiving for someone with Alzheimer’s disease or dementia can go on for years.
Be realistic about the progression of the disease. As much as we would all love to have our loved one stay at home in their familiar surroundings, there may come a time when the patient needs more care and attendance than you can give. Be prepared to make choices about where and when to move your loved one to an assisted care facility or hospice when needed.
Make your self-care a priority. Some caregivers will neglect their own health, missing medications, missing doctor appointments, forgetting to eat, bath, or pay bills on time. As much as devotion to the patient is to be admired, you must make sure to take care of your own health first in order to maintain your strength and ability to carry on each day.
While there is no cure for Alzheimer’s disease there is are prescription medications on the market that may help. Aricept is the brand name for generic donepezil. It is a medication used to treat dementia symptoms such as mental changes and memory loss associated with mild, moderate or severe Alzheimer’s disease.
Further information on Aricept can be found at the following link: Learn More
This article contains medical information provided to help you better understand this particular medical condition or process, and may contain information about medication often used as part of a treatment plan prescribed by a doctor. It is not intended to be used as either a diagnosis or recommendation for treatment of your particular medical situation. If you are unwell, concerned about your physical or mental state, or are experiencing symptoms you should speak with your doctor or primary health care provider. If you are in medical distress please contact emergency services (such as 911).