Alzheimers Support For Family And Caregivers
While your loved one may be dealing with the symptoms and lifestyle changes that come with the disease, the affects of Alzheimers dont stop there. As a caregiver or family member of someone with Alzheimers, you will also be dealing with the sadness that comes from watching someone you love lose their memories of the details of their life.
Families And The Financial Burden Of Alzheimers
Alzheimers can have a devastating financial impact on families. Many family caregivers have had to cut back on spending, dip into personal retirement savings and sell assets for disease expenses. Of the 15 million unpaid caregivers in the United States, two out of five have a household income of less than $50,000.
Recently, a Family Impact of Alzheimers survey interviewed over 3,500 people, 500 of whom provided caregiving and/or financial aid to a parent or senior loved one with the disease.
The survey found that:
- Nearly 50% of caregivers cut back on spending
- 20% went to the doctor less often
- 11% of caregivers failed to get their own medications
- 11% cut back on childrens educational expenses
How Do People Know They Have It
The first sign of Alzheimer disease is an ongoing pattern of forgetting things. This starts to affect a person’s daily life. He or she may forget where the grocery store is or the names of family and friends. This stage may last for some time or get worse quickly, causing more severe memory loss and forgetfulness.
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What Will The Doctor Do
It can be hard for a doctor to diagnose Alzheimer disease because many of its symptoms can be like those of other conditions affecting the brain. The doctor will talk to the patient, find out about any medical problems the person has, and will examine him or her.
The doctor can ask the person questions or have the person take a written test to see how well his or her memory is working. Doctors also can use medical tests to take a detailed picture of the brain. They can study these images and look for signs of Alzheimer disease.
When a person is diagnosed with Alzheimer disease, the doctor may prescribe medicine to help with memory and thinking. The doctor also might give the person medicine for other problems, such as depression . Unfortunately, the medicines that the doctors have can’t cure Alzheimer disease they just help slow it down.
What Causes Alzheimer Disease
Lots of research is being done to find out more about the causes of Alzheimer disease. There is no one reason why people get it. Older people are more likely to get it, and the risk increases the older the person gets. In other words, an 85-year-old is more likely to get it than a 65-year-old. And women are more likely to get it than men.
Researchers also think genes handed down from family members can make a person more likely to get Alzheimer disease. But that doesn’t mean everyone related to someone who has it will get the disease. Other things may make it more likely that someone will get the disease, such as high blood pressure, high cholesterol, Down syndrome, or having a head injury.
On the positive side, researchers believe exercise, a healthy diet, and taking steps to keep your mind active may help delay the start of Alzheimer disease.
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Inspiring Wellness Every Day At Lions Gate
Lions Gate, located in Voorhees, NJ, offers a continuum of lifestyle and care options rooted in Jewish traditions and values. Whether you are in need of Independent Living,Assisted Living, Memory Care, Skilled Nursing or Rehabilitation Services, Lions Gate has you covered.
Our mission at Lions Gate is to enrich the lives of those we serve through quality and compassionate care consistent with our heritage and values. We strive to provide programs and services that inspire well-being, as well as social, cultural and spiritual independence.
As a full-service community rich in wellness programs, meaningful experiences and educational opportunities from Lions Gate University, Lions Gate allows residents to connect with those who share their interests and cherished traditions. Our goal is to provide residents with an active, worry-free lifestyle filled with ways to connect with others, pursue their passions and be engaged in everyday life. While we focus on Jewish customs and traditions, we welcome people of all faiths to the Lions Gate family.
Through our affiliation with Jewish Senior Housing and Healthcare Service, we also offer three senior living communities for those with limited incomes.
The Effects Alzheimers Disease Has On Family Members And Caregivers
When your family member starts to experience the symptoms of Alzheimers and receives a diagnosis, it may be difficult to know what the right measures will be to take in order to provide the best type of care for your loved one. As the disease progresses family may feel their role as caretaker has become increasingly harder for the family member to perform at the rate or ability they once did. Psychologists often refer to the families and caregivers of those with memory loss as the invisible second patients as it has a ripple effect that can impact the entire family.
The effects of Alzheimers disease can be particularly challenging for primary caregivers within the family. In addition to dealing with the normal activities of everyday life, caregivers must also provide round-the-clock care and support to their loved one. Studies have shown that primary caregivers often become physically and emotionally overburdened and experience high rates of physical illness, social isolation, and emotional distress including depression. Sadly, the price of their devotion to their loved one is often a poorer quality of life for themselves.
Thus, an introduction to home care options may relieve some stress from these tasks and who to delegate them to and hiring home health care may help them in still maintaining their independence but also receive some much needed help or stress relief from those tasks.
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Why Do Family Caregivers Care
Family caregivers may be motivated to provide care for several reasons: a sense of love or reciprocity, spiritual fulfillment, a sense of duty, guilt, social pressures, or in rare instances, greed. Caregivers who are motivated by a sense of duty, guilt, or social and cultural norms are more likely to resent their role and suffer greater psychological distress than caregivers with more positive motivations. Caregivers who identify more beneficial components of their role experience less burden, better health and relationships, and greater social support.
How To Communicate If You Have Dementia
Tell those close to you what you find hard and how they can help you.
For example, you may find it helpful if people calmly remind you:
- what you were talking about
- what someones name is
Other things that can help include:
- making eye contact with the person youre speaking with
- turning off distractions like radio or TV
- asking people to talk more slowly and repeat what they have said if you dont understand it
- asking people not to remind you that you repeat things
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Tips For Changes In Communication And Behavior For People With Dementia
Communication can be hard for people with Alzheimers and related dementias because they have trouble remembering things. They also can become agitated and anxious, even angry. In some forms of dementia, language abilities are affected such that people have trouble finding the right words or have difficulty speaking. You may feel frustrated or impatient, but it is important to understand that the disease is causing the change in communication skills. To help make communication easier, you can:
- Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful.
- Allow the person to keep as much control in his or her life as possible.
- Respect the persons personal space.
- Build quiet times into the day, along with activities.
- Keep well-loved objects and photographs around the house to help the person feel more secure.
- Remind the person who you are if he or she doesnt remember, but try not to say, Dont you remember?
- Encourage a two-way conversation for as long as possible.
- Try distracting the person with an activity, such as a familiar book or photo album, if you are having trouble communicating with words.
When Someone You Love Has Alzheimer Disease
You might feel sad or angry or both if someone you love has Alzheimer disease. You might feel nervous around the person, especially if he or she is having trouble remembering important things or can no longer take care of himself or herself.
You might not want to go visit the person, even though your mom or dad wants you to. You are definitely not alone in these feelings. Try talking with a parent or another trusted adult. Just saying what’s on your mind might help you feel better. You also may learn that the adults in your life are having struggles of their own with the situation.
If you visit a loved one who has Alzheimer disease, try to be patient. He or she may have good days and bad days. It can be sad if you can’t have fun in the same ways together. Maybe you and your grandmother liked to go to concerts. If that’s no longer possible, maybe bring her some wonderful music and listen together. It’s a way to show her that you care and showing that love is important, even if her memory is failing.
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Medications To Treat The Underlying Alzheimer’s Disease Process
Aducanumab is the first disease-modifying therapy approved by the FDA to treat Alzheimers disease. The medication helps to reduce amyloid deposits in the brain and may help slow the progression of Alzheimers, although it has not yet been shown to affect clinical outcomes such as progression of cognitive decline or dementia. A doctor or specialist will likely perform tests, such as a PET scan or analysis of cerebrospinal fluid, to look for evidence of amyloid plaques and help decide if the treatment is right for the patient.
Aducanumab was approved through the FDAs Accelerated Approval Program. This process requires an additional study after approval to confirm the anticipated clinical benefit. If the follow-up trial fails to verify clinical benefit, the FDA may withdraw approval of the drug. Results of the phase 4 clinical trial for aducanumab are expected to be available by early 2030.
Several other disease-modifying medications are being tested in people with mild cognitive impairment or early Alzheimers as potential treatments.
Support For Families And Alzheimer’s Disease Caregivers
Caring for a person with Alzheimers can have significant physical, emotional, and financial costs. The demands of day-to-day care, changes in family roles, and decisions about placement in a care facility can be difficult. NIA supports efforts to evaluate programs, strategies, approaches, and other research to improve the quality of care and life for those living with dementia and their caregivers.
Becoming well-informed about the disease is one important long-term strategy. Programs that teach families about the various stages of Alzheimers and about ways to deal with difficult behaviors and other caregiving challenges can help.
Good coping skills, a strong support network, and respite care are other things that may help caregivers handle the stress of caring for a loved one with Alzheimers. For example, staying physically active provides physical and emotional benefits.
Some caregivers have found that joining a support group is a critical lifeline. These support groups enable caregivers to find respite, express concerns, share experiences, get tips, and receive emotional comfort. Many organizations sponsor in-person and online support groups, including groups for people with early-stage Alzheimers and their families.
Read about this topic in Spanish. Lea sobre este tema en español.
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Can Alzheimer Dementia Be Prevented Or Avoided
No one knows how to prevent or avoid Alzheimer Dementia. However, doctors believe that healthy living and keeping your brain active can help lower your risk. Or it may delay its onset. That means eating a healthy diet, lowering your alcohol consumption, not smoking, staying physically and socially active, and challenging your mental abilities with brain games.
Screening may be valuable in early detection for many diseases. However, the American Academy of Family Physicians states that there is not enough current evidence to show that routine screening for cognitive impairment is helpful.
Risk Factors For Developing The Disease
There are both controllable and uncontrollable risk factors for AD, with age being the leading known uncontrollable one . Most people are diagnosed at the age of 65 y or older . Another uncontrollable risk factor is family history. Individuals who have a first-degree relative with the disease are more likely to develop it than those who do not, and those who have more than one first-degree relative with the disease are at even higher risk . Genetics is also an uncontrollable risk factor, as there are 3 genes linked to early-onset AD and a fourth gene, apolipoprotein E, linked to late-onset AD . A final uncontrollable risk factor is sex, with more women than men having AD and other dementias. Almost two thirds of Americans with AD are women. Also, among people 71 y old or older, 16% of women have AD or other dementias, compared with 11% of men . There are several possible reasons why more women than men have AD and other dementias, the biggest being that women live longer than men, on average, and that older age is the greatest risk factor for AD .
Controllable risk factors for AD include high cholesterol levels, high blood pressure, lack of regular exercise, and lack of intellectually stimulating activities .
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Diagnosis And Science Of Alzheimers Disease
At present there is no single test that leads to a diagnosis of AD. The doctor first needs to establish that the memory loss is abnormal and that the pattern of symptoms fits AD. This sometimes requires specialized memory testing. The doctor then needs to rule out other illnesses that can cause the same symptoms. For example, similar symptoms can be caused by depression, malnutrition, vitamin deficiency, thyroid and other metabolic disorders, infections, side effects of medications, drug and alcohol abuse, or other conditions. If the symptoms are typical of AD and no other cause is found, the diagnosis is made. In the hands of a skilled doctor, this diagnosis is very accurate.
Rapid scientific progress is being made in identifying âbiomarkersâ of AD. Biomarkers are abnormal findings in blood, or cerebrospinal fluid , or on brain scans that are markers of AD. Strong evidence suggests that special tests of the CSF may be useful diagnostically. It is also possible now to see amyloid, a key abnormal protein in AD, in the brain using PET scans. As knowledge advances, these tests may come into clinical use. Even now, however, it is clear that they will not be good enough to diagnose AD on their own. The diagnosis will still depend on a skilled and thorough evaluation.
What Is Known About Caregiving For A Person With Alzheimers Disease Or Another Form Of Dementia
People with Alzheimers disease and related dementias are usually cared for by family members or friends. The majority of people with Alzheimers disease and related dementias are receiving care in their homes. Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimers disease and related dementias. In 2019, these caregivers will provide an estimated 18.5 billion hours of care. Approximately two-thirds of dementia caregivers are women, about one in three caregivers is age 65 or older, and approximately one-quarter of dementia caregivers are sandwich generation caregivers, meaning that they care not only for an aging parent, but also for children under age 18.
Caregivers of people with Alzheimers and related dementias provide care for a longer duration than caregivers of people with other types of conditions . Well over half of family caregivers of people with Alzheimers and related dementias provide care for four years or more. More than six in ten Alzheimers caregivers expect to continue having care responsibilities for the next 5 years compared with less than half of caregivers of people without dementia .
The demands of caregiving can limit a caregivers ability to take care of themselves. Family caregivers of people with Alzheimers and related dementias are at greater risk for anxiety, depression, and poorer quality of life than caregivers of people with other conditions.
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Support For Family Caregivers Is Important For Everyones Well
The Alzheimers Association states, Part of living well with Alzheimers is adjusting to your new normal and helping family and friends do the same. Knowing what to expect and what resources are available can make the process easier for you and those close to you.
Given the many difficulties presented by a loved one with Alzheimers, adequate support resources are vital for the individual providing the majority of the care. Experts say that a safety net of support can actually reduce anxiety for caregivers by increasing the perception that resources are available to help handle the stressful situations.
Support can be found in many different forms, including the help of other family members and close friends, partnerships with health professionals, community resources and other useful tools such as support groups, respite care, help lines, online training assistance and outside professional care.
The latest technology-based support resources for caregivers are also proving to be of significant value. Today, technological assistance is available in many forms, including: care coordination scheduling and management software conference calling among family members telephone support systems with automated messages online discussion groups electronic reminder services computer based forums with question and answer sessions and computer-based decision support modules.