Current estimates show that nearly 5.5 million Americans are living with Alzheimer’s disease. Most of these individuals are 65 and older with only about 200000 being under 65. Further statistics have it that there are about 15 million Americans who serve as unpaid Alzheimer’s caregivers providing an approximated 18.2 billion hours which are valued at over $230 billion.
Alzheimer’s disease often causes individuals to display unpredictable and unusual tendencies that challenge their caregivers. They include combativeness, severe mood swings, repetition of words, physical or verbal aggression, and wandering. These behavior changes are often the reason for frustration in both the patients and their caregivers. So it is essential to not only highlight the plight of people living with Alzheimer’s, but it is also necessary to cast light on the challenges faced by the silent heroes who take care of these individuals.
Providing care for someone living with Alzheimer’s or other forms of dementia often necessitates the care provider to adjust their response to the individual’s behavior or make some changes in the patient’s environment. This, however, is easier said than done as reports indicate that caregivers for persons with Alzheimer’s typically experience high levels of emotional stress and consequently suffer from depression.
Other figures show that these caregivers are twice as likely to have substantial financial, physical, and emotional difficulties as compared to those who provide care to individuals without dementia. Let us look at some of the challenges that care-providers face as they take care of Alzheimer’s disease patients.
More often than not, it is the behavioral changes in AD patients that present difficulties and challenges in caregiving. It is important to note that these changes are not spiteful or willful. The following are some of the said behaviors and tips on how caregivers can manage them.
- Agitation
The patient may be anxious and worried, and this is often manifested through restlessness, pacing, and irritability. The individual may not be able to tell their caregiver what is wrong and this might cause frustration on the part of the care provider. Typically, the cause for this is related to issues such as uncertainty of what is happening around them, losing something that is important to them, a lot of activity, or presence of too many people.
Tips
- The caregiver is advised to avoid making drastic changes to the daily routine.
- Try and move at the patient’s pace during routines.
- Listen to them while reassuring them using a calm voice. Additionally, reduce noise and commotion.
- Distract and redirect them to another activity.
- Repetitive Actions and Speech
The individual may tend to ask the same questions over and over again or do some action such as folding a towel repeatedly. This indicates that the individual might be bored or anxious.
Tips
- Distract them with exercise or music.
- Ignore the behavior.
- Answer the question as if they’ve never asked it before.
- Be soft and calm.
- Wandering
The individual may start walking aimlessly and become disoriented. This often occurs when they want to perform an important task to them or when searching for somebody.
Tips
- Figure out what situations prompt the wandering.
- Alert neighbors.
- Install alarm bells and locks.
- Put a bracelet with your contact information on them.
- Consider getting them a medical alert bracelet.
- Paranoia
Persons with AD have difficulties interpreting what is going on around them. Due to their impaired memory, they might not be able to follow conversations or remember where they put their stuff. Consequently, they become suspicious and may even accuse other people of stealing from them because there isn’t any other explanation that makes sense.
Tips
- Do not argue with them or take the accusations personally.
- Help them look for the missing items.
- Distract or engage them in another activity.
- Have extras for things that are important to them such as glasses and keys.
Other challenges that caretakers for people living with Alzheimer’s include:
- Having no time for themselves due to the large periods spent in their caregiving duties. This often implies that they have to sacrifice work and the things that they enjoy doing.
- Financial strain. Caregiving is a full-time job, and this means that the caretakers have to quit their day jobs. As most of them are unpaid, the financial strain takes effect sooner or later.
- Sleep deprivation. Caregiving can get one’s sleep-wake cycle mixed up. The lack of sleep will take a toll on the care-provider and add to the pressure that they already have.
- Depression and Isolation. Due to the lack of social connections while tending to their caregiving duties. The caregiver is usually at a high risk of depression.
Care-providers for people with Alzheimer’s disease play a vital yet uncelebrated role in the management of this disease. They sacrifice their personal lives to care for their loved ones and often without pay. More attention should be given to these individuals and provide them with necessary resources to assist them in their duties. Healthcare treatments for people living with Alzheimer’s currently stand at $259 billion and is expected to get to $1 trillion by 2050. With life expectancy on the increase, the number of people living with Alzheimer’s is expected to double by mid-century. This means it is crucial to have policies in place that will help ease the burden placed upon the caregivers.
THIS GUEST POST WAS WRITTEN BY MEREDITH ROGERS.
One of the worst parts of losing dad was how much we lost of him while he was still alive. I am praying for a cure in my lifetime.
These are fantastic tips. During this Christmas season as I and my friends age I found there is hardly a group that at least one is dealing with a parent with dementia. It is so hard to watch your loved one leave but still physically be present in body only.
This is such great advice. When I worked with Hospice, it drove me crazy when when adult kids would argue with their memory impaired parent. It was heartbreaking.
Rena you are so inspirational in what you do in this area – and in your blogging business too. I have loved watching you flourish and am in awe of what you achieve with all the commitments you have xx Happy New Year!
This is a very informative post on this dreadful disease. I had a client (a Senior care center) and training for staff and family members on how to care for family members with Alzheimer’s was always a top priority. It can be stressful and frustrating, both for the senior and the caregiver if you don’t understand the disease and how it affects your loved one. These tips are invaluable!
God Bless the caregivers as they are truly Angels on Earth!
This is excellent advice. I am a nurse and have shared this advice many times with caregivers. Some can adapt these behaviors and others cannot do it. All have difficulty when they are tired and worn out, which is frequent. My sister stayed with my Dad in his last two years when his mind was failing and she had so much difficulty coping. It was as hard to see her under such stress as it was to see my Dad become more confused and agitated. Good work you are doing, Rena!
My 92 year old mother has symptoms of dementia and I am not very good at interacting with her. I’ve taken over dealing with her finances. My younger sister, an Occupational Therapist, does much better with her. They were also more emotionally enmeshed when my sister was young. Your blog is a valuable resource. Thank you.