Caring for a loved one with Alzheimer’s disease

As a family member caring for someone with Alzheimer’s disease, you are on the front line of a challenging journey. You may be at the beginning of caregiving for a loved one with Alzheimer’s or well into all of the tasks and duties that require time, patience and financial resources.

Although Alzheimer’s and related dementias are getting more and more attention, caregivers are still the foundation of Alzheimer’s care, with an estimated 5.8 million Americans with the disease. The CDC estimates that by 2060 the number of people with Alzheimer’s will be 14 million. In addition, 15.7 million adult family caregivers care for someone with Alzheimer’s disease or another type of dementia. Moreover, 46% of caregivers often perform medical and nursing tasks with little or no training.

So, you are not alone, but that may be a small consolation. Since there is no cure for Alzheimer’s disease, how can you best care for someone? There is much we don’t know about Alzheimer’s, and the condition can manifest in unique ways. However, research and family caregivers have given us a lot of information about caring for people with Alzheimer’s disease. The more you know, the better care you can provide and the less stress it will have on you and your family.

What is Alzheimer’s disease?

Alzheimer’s disease is a progressive brain disorder that eventually causes severe impairment in memory, judgment and thinking skills. Ultimately, a person with the disease cannot care for themselves, and death usually occurs within three to 10 years of diagnosis. Currently, there is no way to predict who will get Alzheimer’s disease, but the incidence increases with age.

Stages of Alzheimer’s disease

Understanding and anticipating the stages of Alzheimer’s disease is critical to planning and caregiving. Your loved one will not stay the same. Unfortunately, they are likely to get worse. Let’s look at the established stages of the disease.

Early stage (mild)

During the early stage of Alzheimer’s, a person has some mild symptoms such as forgetfulness, trouble organizing, coming up with the right name for objects and misplacing items. A person in this early stage will be independent, work and be able to drive. A doctor can use diagnostic screening tools to identify this stage. If advanced planning hasn’t occurred, this is the best time to do it while your loved one can participate.

Middle stage (moderate)

The middle stage of Alzheimer’s can last for years. At this stage, your loved one may be very forgetful, have confusion about the day or where they are, have behavioral changes like anger, paranoia, delusions or agitation, and need help with activities of daily living. Other physiological changes include bowel and bladder incontinence and poor sleep. One of the more vexing behaviors in this stage is wandering, which can be dangerous if not managed.

Late stage (severe)

During this state, a person loses the ability to have a conversation, control movement or respond to their environment. In late-stage Alzheimer’s, the person needs round-the-clock care for all activities and care needs. Hospice care might be appropriate at this stage of the disease.

Advanced planning

Advanced planning is a necessary component to caring for someone with Alzheimer’s disease. However, unless there is someone in the family to provide full-time caregiving, other support systems will need to be put in place, and many of those will be costly. Some things to think about:

• How will you pay for care? Private caregiving or memory care are the two primary support services for people with Alzheimer’s, and they are both private pay unless you have a long-term care insurance policy. A financial professional can assist families with putting a plan in place for future care needs.
• What about home accessibility? If your loved one is at home, they may need some modifications to stay safe for as long as possible. Grab bars, stair glides, railings and wander guards are just a few of the changes to make. In addition, if the home has multiple accessibility problems, a move to single-level living might be an option.
• What are your loved one’s end-of-life wishes? Before it is too late, fill out advance directives that allow your loved one to state what life-saving interventions they do or do not want.
• Who has health care and financial power of attorney? As a family, decide who will be health care and financial power of attorney. If and when your loved one can no longer communicate health care or financial decisions, someone will need the authority to step in.

Care concerns and strategies

Taking care of someone with Alzheimer’s disease is exhausting and frustrating. Fortunately, there are some tried and true methods of taking care of someone. Of course, safety is always a concern, but so is the quality of life.

AGITATION AND AGGRESSION

Agitation and aggression can be extremely challenging to cope with. Most of the time, there is a reason for agitation and aggression, but your loved one can’t express themselves. Consider these possibilities:

• Stress from the environment. If the conditions are too noisy or confusing, take your loved one to a quiet location.
• Untreated pain can cause agitation. Take your loved one to the doctor to rule out any medical problems.
• Too little sleep due to sundowning. If possible, keep a routine with plenty of activity during the day so that your loved one is tired at night. Use caution when considering sleep medication.
• Your loved one may feel lonely and isolated with too little stimulation. Finding activities to keep someone occupied can be tricky, but there are hundreds of suggestions online, from simple crafts to folding laundry and sorting things. Also, consider adult day care to provide some respite.
• Being pushed by others to do things such as bathe or urging someone to remember things they can’t contribute to frustration and anger.

WANDERING

Wandering is such a serious problem that people have died due to leaving their home in the winter without adequate clothing. However, there are things you can do to prevent wandering.

• Keep all doors locked and place the lock very high or low on the door.
• Install a system that announces when the door is opened.
• Make sure your loved one has an ID bracelet with identifying information.
• Consider enrolling in the Alzheimer’s Safe Return Program.
• Some emergency response system pendants have GPS.

HALLUCINATION AND DELUSIONS

Hallucinations, delusions and paranoia are disturbing for your loved one and you. Some of these strategies might help.

• Try distracting the person. Distracting is a technique that has been found to work well with people with Alzheimer’s for all sorts of problems. For example, music, a walk, a craft activity and cooking are all possible distractions.
• Don’t argue with the person. Trying to tell someone that what they see or think is untrue will only make things worse. Instead, agree and be reassuring and calm in your tone.
• Try not to overact if your loved one accuses you of something that isn’t true.
• Talk to your loved one’s doctor about any possible medication interactions.

SUNDOWNING AND SLEEP

Sundowning is a common problem for people with Alzheimer’s. The symptoms are increasing agitation, pacing and difficulty sleeping at night. Tips to address sundowning:

• Make sure your loved one gets plenty of activity during the day, along with some safe sun exposure.
• Do not serve caffeinated beverages later in the day.
• Create a relaxing and calm environment before bed. Some people swear by aromatherapy. Make sure the sleeping room is completely dark and cool.
• If the problem persists, talk with your loved one’s doctor about any appropriate medications to help.

COMMUNICATION

Communication may be one of the more challenging aspects of caring for someone with Alzheimer’s. Unfortunately, this is a person you may have known for years who has changed to the point where they may be unrecognizable. It can be heartbreaking and demoralizing to have lost the ability to communicate with your loved one in the ways you are used to. But there are things you can do to improve communication and keep a loving connection.

• Listen to concerns calmly, even if they don’t make sense. People with Alzheimer’s are often afraid and anxious and need you to reassure them.
• Demonstrate a warm and loving attitude.
• Use eye contact and speak slowly and clearly.
• Ask yes or no questions rather than open-ended ones.
• Limit choices so as not to cause confusion.
• Try not to get angry or upset.
• Look at photographs and try reminiscing.

Self-care

Caregiver burnout is a serious concern for family members who care for a loved one with Alzheimer’s disease. As your loved one becomes more impaired, the daily hands-on tasks become more complicated and time-consuming. Stress, anxiety, substance use are just a few of the consequences of ignoring self-care.

The other consideration is the financial toll of caregiving. If you have quit your job to care for a loved one with Alzheimer’s, you are losing income and jeopardizing your chances of returning to the job market. Therefore, financial planning is critical to maintaining and stabilizing your estate. We also have some self-care suggestions to keep you centered and healthy.

Ask for help

As the primary caregiver, you know best. But, asking for help is an essential part of self-care. Start with your family. Often other family members want to help but don’t know what to do. Even simple requests like picking up groceries or medications can make a significant difference. Request visits with your loved one and educate others about what they can expect and how to act.

If finances allow, consider hiring private caregivers through a licensed and bonded agency. Even a few hours a week can make a difference, and it might be good for your loved one, too. In addition, the cost of private caregivers might allow you to continue to make an income from your job.

Online caregiver support groups and websites provide great caregiving tips and create a welcoming and caring space to share. As a result, you will feel less alone and may learn some techniques that help you in your day-to-day caregiving.

Monitor your health

When people are stressed, they tend to eat poorly, get inadequate sleep and rely on alcohol and drugs to manage stress. It takes effort, but focus on good nutrition, preventative health visits, staying hydrated and sleeping well. Do the same things you are doing for your loved one who has Alzheimer’s.

Stay socially connected

Has your social life shriveled? It’s not as if you can take your loved one with you to social events, and having people over may be too stimulating. But, there are other ways to stay connected. Reach out by phone and talk with your friends. Use your private caregivers to take some time to have lunch with a friend. If you don’t make time for people, you may become more and more isolated.

Exercise

Whether it is a walk, yoga, biking or going to the gym, exercise improves mood and keeps you healthy. If you can’t get out of the house, there are plenty of remote classes to participate in.

Maintain your interests

Yes, there is no time to pursue your interests, but try to maintain what you can. Ask a family member to pitch in while you engage in one of your passions.

Meditation and deep breathing

Meditation practice and deep breathing can help you stay calm and centered. For example, your loved one may be angry at you at times, and deep breathing has been shown to help people cope with overwhelming emotions.

Seek the help of a therapist

If you are suffering from depression or anxiety, consider the help of a counselor or therapist. Some therapists specialize in caregiving and issues related to aging. They can help you set reasonable self-care goals and deal with family conflict and guilt.

Caring for a loved one with Alzheimer’s disease

As we hold out hope for a cure for Alzheimer’s disease, caregiving for our loved ones goes on. Family caregivers need financial, emotional and hands-on support. Planning for the future and educating yourself along the way will help. At the end of the caregiving journey, you still have yourself, your family and your career to manage. Take good care of yourself as you care for your loved one with Alzheimer’s disease.

Alliance America can help

Alliance America is an insurance and financial services company dedicated to the art of personal financial planning. Our financial professionals can assist you in maximizing your retirement resources and achieving your future goals. We have access to an array of products and services, all focused on helping you enjoy the retirement lifestyle you want and deserve. You can request a no-cost, no-obligation consultation by calling (833) 219-6884 today.