Why Is Dealing With Dementia So Hard?
Dealing with dementia can be challenging because no family or individual journey is the same. Memory loss can be related to a diagnosis of dementia, Alzheimer’s, Parkinson’s Disease, a brain injury, or associated with other chronic diseases.
So, whether you are the person diagnosed or a caregiver of a person with dementia, this information will help you prepare for and manage the changes that memory loss presents. As the caregiver, you may be the person to lead through the process. If you are a person with memory loss in the early stages, you may decide to take the lead.
1 Emotionally Adjusting to the Diagnosis
Sometimes the diagnosis is a shock for the person diagnosed, the people in their family, and the caregiver, especially if the diagnosis is early-onset. Early-onset dementia affects people younger than the age of 65.
Another variant of Alzheimer’s disease can occur in persons as young as 20 or 30 years old in the Hispanic population. To learn more about this type of early onset Alzheimer’s Disease, listen to The Caring Generation Episode 103 and my interview with Dr. Mellissa Withers, Associate Professor at the Keck School of Medicine from Southern California.
Even if a loved one has been forgetful for some time and the family has been suspicious, receiving a delayed diagnosis can still be emotion-filled. However, the benefit of finally confirming the diagnosis places the person with dementia or Alzheimer’s and their caregivers in control of how to respond and plan for future care.
If a memory loss diagnosis is new to you, there may be a sense of uncertainty about what to do next. Creating a plan brings us back to how to deal with dementia.
Like any unexpected diagnosis or event in life, being proactive in learning about, identifying options, and creating a plan can help balance emotional ups and downs. Life presents unexpected situations every day.
Do We or Don’t We Talk About Memory Loss?
Caregivers ask if they should talk openly with an elderly parent or spouse about having dementia or Alzheimer’s. Discussing dementia can complicate family relationships depending on how far memory loss has progressed when there are different opinions.
If a diagnosis has been given after the disease has progressed, then it may not be possible for a loved one with dementia to understand what is happening or realize that they are forgetful. Families choose different ways to deal with dementia.
A loved one may get angry because they know someone with dementia or Alzheimer’s and don’t want to be like them. Or a parent or spouse may not believe you when you tell them they are forgetful. So instead, they become argumentative or combative.
I have been involved in situations where a spouse or adult children agree never to discuss the diagnosis. Instead, they provide care and comfort by saying things like, “everyone gets a little forgetful now and then with age.” They avoid using any words related to memory loss.
Giving or Receiving Bad News
There are also circumstances when caregivers struggle when a loved one asks for information about dementia or Alzheimer’s. Fear exists that a loved one may become frightened by receiving the information, so the caregiver is not sure how to respond.
My opinion is that if a loved one is asking about Alzheimer’s or dementia, they have a right to receive information. However, the caregiver and the family should consider how much detail to provide and how to present the information.
So, for example, you could share some information and see how your loved one reacts. You may be surprised that a little bit of information satisfies curiosity, and there is no need to provide more detail.
Providing limited information or responding with a short response is often used in dementia care. Memory can be so brief that offering lengthy sentences or explanations can be more confusing for the forgetful.
There are also times to confabulate. For example, your mother is worried about her parents not being home. You know they are dead, but instead, you say, “your mom and dad are at the store. I’m sure they will be home soon.”
The goal is to respond to worry or insecurity to make a loved one comfortable. Knowing that their memory is short, they will forget the conversation. You can redirect their attention elsewhere to another activity.
Responding to the Unexpected
Being diagnosed with memory loss can be a frightening experience. However, the best case scenario happens when the diagnosis comes in the early stages and the person diagnosed is wants to be involved, learn, and make a care plan.
Dealing with dementia means learning how to respond appropriately to various unexpected situations. For example, we’ve all experienced being cut off by another car while driving on the freeway or having someone cut in line in front of us.
We choose how to respond. Options include becoming angry and responding rudely. Or let the interaction go and bless or forgive the circumstance.
Other people’s actions or reactions are more about them and what is happening in their life today. This means that the stresses others experience can impact how they respond to other people.
It’s not you or me that they are reacting to—it’s highly probable that they are responding to upset about something or someone else. Any person coming their way is the receiver of anger, frustration, or upset.
Thinking about how to respond to others in all circumstances is critical. As a caregiver, you will become involved with doctors, insurance companies, pharmacists, and other healthcare providers. As memory loss progresses, the behavior of loved ones will change. These interactions present an opportunity to respond positively to preserve a relationship.
Responding to Memory Loss Behaviors
If you are unfamiliar with memory loss behaviors, a person with dementia can participate in repetitive speech patterns and become upset, afraid, or agitated. Therefore, it is crucial that caregivers learn how to respond in a calming and reassuring manner. By responding angrily or threateningly, the person with dementia will likely become more agitated.
To learn more about what prompts behaviors and how to respond, check out Pamela’s online caregiver program, Support Caring for Elderly Parents, Section 6, Creating a Plan for Loved Ones With Memory Loss.
Dealing with dementia benefits from learning how to adjust emotionally, accept the diagnosis, and respond with patience, kindness, and empathy.
2 Being Proactive to Understand How Memory Loss Progresses
Being proactive in learning how to deal with dementia means avoiding being in denial or digging your head in the sand.
It’s best not to wait for the diagnosis to worsen before you are forced to take action.
Dementia and Alzheimer’s progress differently for every individual. However, there are common factors:
- Confusion
- Poor judgment and decision making
- Inability to learn new things
- Perseveration or becoming “stuck” on a subject or activity
- Forgetting to take medications, eat, bathe, change clothes, and complete other grooming tasks
- Experiencing delusions, paranoia, angry or aggressive behaviors
If you are a caregiver for a person with dementia, learn as much as possible about the progression of memory loss, changes in health, and potential behaviors, so you are prepared for the unexpected. If you are a person diagnosed with memory loss, have honest conversations with your caregiver and family about your desires for care.
3 Participating in Ongoing Medical Care
Ongoing medical care to manage dementia and other chronic diseases is essential for persons with dementia. If a loved one currently sees a primary care physician, establishing relationships with a geriatrician can be beneficial
A geriatrician is a specialist in healthcare for persons over age 60 or 65. Other specialists caring for persons with memory loss are neurologists, neuropsychologists, and geriatric pharmacists.
Neurologists are experts in treating diseases of the brain and nervous system. Neuropsychologists examine the relationship between memory loss and behaviors. A geriatric pharmacist can look at medications prescribed and discuss potential adverse interactions.
If you have done homework on memory loss, you may be aware that medications are reported to slow down the rate of memory loss. In addition, there are other medications that help manage behaviors.
For more about managing medications in the elderly, listen to The Caring Generation Podcast Episode 21 How to Manage Medications for Elderly Parents features an interview with Dr. Neha Jain, a geriatric psychiatrist.
Beyond regular medical care, taking medications, eating a healthy diet, regular exercise, and maintaining social activities are positive for the mind and body
4 Preparing Legal Documents
Preparing legal documents, such as appointing an agent under power of attorney—means deciding who will help you or the person with dementia make medical and financial decisions. There will be a point when a memory loss diagnosis prevents loved ones from comprehending, evaluating, and making decisions
Creating these documents is often best done with an Elderlaw, estate planning, or probate attorney. While many individuals download a form from the Internet, most general forms do not consider the particular circumstances of how to deal with dementia.
When you appoint a medical and financial agent, you want to complete a living will that directs your wishes about medical care in the event of an emergency or at the end of life. Then a will or a trust, depending on your financial holdings.
If you want more information about the medical decisions you might make in the future, and the person with dementia is over age 65, investigate the Medicare benefit of Advanced Care Planning. Advanced care planning is a session with your doctor to discuss your health, specific to the diagnosis and decisions you may want to make about your health as time progresses.
This process is beneficial if the doctor involved in this process is knowledgeable about how advancing memory loss combined with other chronic diseases can result in future health complications. Having conversations about the benefits of a feeding tube or having certain types of surgery is essential
5 Creating a Master File of Important Information
The next step for dealing with dementia is to create a file of all your essential information in a single place, like a filing cabinet or a safety deposit box. This means information that someone—a caregiver or an agent under power of attorney will need to access if they have permission to assist
Organizing this information ensures that it is readily available without spending hours searching for documents. There are three categories of information to collect:
- Medical
- Financial
- Household and personal
Medical
Medical information includes a list of your doctors or providers and their contact information. Then create a list of your prescription medications along with your pharmacy information.
Finally, make copies of the following cards: Medicare, ID or driver’s license, passport, social security, any other health insurance, credit cards, and any others that you use regularly. Having copies can be a lifesaver if a purse or wallet is lost.
Continuing with the medical background, create a list of past surgeries, and allergies to medications or foods. While all of this should typically be available in your online medical records, it’s good to double-check to ensure that this information is correct.
In some cases, if a previous doctor’s office closed and did not participate in online medical records, this information may be lost if you did not request a paper copy before the office closed.
In some situations, healthcare providers change medical records systems, and the prior information may be lost. In my opinion, ensuring you have access to all of your medical history, even if you have to retain copies, keeps you in control.
You can always scan the information, so you are not storing reams of paper. If you have original copies of legal documents, life insurance policies, etc., consider keeping these in a locked filing cabinet in your home or a safety deposit box at the bank.
Financial
Then there are your financial records like a mortgage or rent agreement, bank accounts, vehicle or other loans, health insurance, past income tax returns, and investment account information. An easy way to manage finances may be to create a spreadsheet to list the type of account, a website, contact information, and current amounts as of a specific date.
If you think about it, creating this list of financial accounts can serve double duty as a plan to budget for the costs of care. You may be able to identify expenses that can be reduced to save for future care costs. Some individuals have an accountant, CPA, or financial planner who may be able to assist with gathering some of this information.
Household and Personal
Household and personal vendors and accounts are equally important if a person is hospitalized or in a nursing home for rehab and needs help with paying bills, taking care of the pets, picking up the mail, subscriptions, or membership accounts, stopping the newspaper, or rescheduling hair appointments.
This list that relates to daily life is something that we all manage. But without a list, it can take a caregiver a month if there are no statements of accounts available. If you signed up for the doctor’s medical portal, financial accounts, social media sites, book or music sites, you’ll want to create a list of log-ins and passwords.
The household and personal needs list should include items like electricity, water, trash, sewer, telephone, Internet, lawn or snow care, mortgage, accountant, hairdresser, etc. While gathering all of this information can take time, this also contributes to creating a monthly budget and cost of care plan.
For example, a plan for the future may include a financial budget for costs of care, managing health, and the home setting.
Other Preferences
Having discussions about preferences of where to live, whether at home, in independent, assisted living, or memory care—if living at home alone is no longer a possibility—is critical. Don’t leave decisions to chance about desires for life, health, money, and home.
Suppose you’re unsure how to make all these planning decisions related to daily life, health care, and money. In that case, working with these professionals can save you time, money, and worry:
- A private care manager or caregiving expert who can offer information about care options and costs
- An accountant, CPA, or financial planner to discuss income and expenses so that you know what type of care is practical or if investigating Medical or public benefits will be part of your plan
- An elder law, trust, or estate planning attorney to update or create a medical and financial power of attorney, a living will, and a will or trust documents
6 Relying on a Trusted Caregiver to Identify When Help is Needed
A blow to the ego or sense of self can happen when a person with dementia has lived independently and is faced with a future of eventually relying on others. How to deal with dementia includes a well-being and safety component.
Managing health and well-being, as we previously discussed, means having a caregiver or a person who can attend, provide transportation to doctor appointments, and help you make decisions
Identifying safety concerns is another part of how to deal with dementia. Safety concerns include accidentally leaving stove burners on, resulting in burnt pots or a kitchen fire. Forgetting to turn off faucets can result in a house flood on multiple levels of a home.
Persons without memory loss can become distracted. For example, how often does one leave the house and forget if lights were turned off or a garage door closed?
These are daily issues that persons who don’t have a memory loss diagnosis experience when stressed or becoming distracted. So imagine how these safety issues fast forward to become more complicated for a person with memory loss.
Driving Ability
The ability to continue safely driving a car will eventually become a concern for dealing with dementia. If you are a person with dementia, have you occasionally become lost when driving? Some of my clients ended up in another state after making a wrong turn.
Does your elderly parent’s car have dents that they cannot explain? What about damage to yards, mailboxes, or a garage door?
I hear the response from people with dementia who don’t want to stop driving: “I’ve been driving all of my life, or I’ll be safe, don’t worry about me.”
While caregivers worry about the person with dementia, they also worry about children playing in the street and drivers of other cars who may be injured if a foot is placed on the accelerator instead of the brake.
Some states have driver simulation programs for persons with dementia. These programs estimate the likelihood of becoming involved in a car accident. If your state has a similar program, investigate this program as an option to evaluate a loved one’s ability to drive.
Wandering
Other safety issues include wandering out of the home and becoming lost. As we discussed earlier, eventually, persons with dementia will need reminders to bathe, eat, take medications, and help with all care activities.
Disagreements about the abilities and safety of persons with dementia can result in substantial arguments. Whether between a family caregiver or friends who mentions concerns to the person with dementia who is in denial or unable to recognize these events.
For this reason, dealing with dementia if you are diagnosed means you must appoint someone you can talk to about everything. A person you will trust if they tell you things that you may not like.
Trying to help an elderly parent or a spouse who is a safety risk but denies issues is a significant frustration and worry for family caregivers.
7 Planning Future Care
While it might be hard to imagine the subsequent events that might happen, assume that paid in-home caregivers may be necessary if family or friends can’t help or help enough. Assume that when 24/7 care and supervision are needed, moving to an independent and then assisted then memory care community may be a reality.
Planning for future care means being proactive, practical, and realistic today. How to deal with dementia means investigating services and touring communities while you are physically and mentally able.
Look at the costs. How will you pay for this care? Will you run out of money and need to apply for Medicaid to pay for your care?
If so, investigate what Medicaid means. Contact your state agency of long-term care for information about the application process. If you have an Elderlaw or estate planning attorney, ask them about Medicaid planning.
How to deal with dementia means placing yourself in the best possible position to understand your options so that you can put a plan in writing.
Why in writing? Because your children or others involved in your life might disagree when memory loss progresses, and you cannot state your preferences. So, remove the guesswork and end any potential disputes within your family during and after your life.
For more on what to do when families don’t get along, listen to The Caring Generation Podcast Episode 17 and my interview with Attorney Spencer Crona who shares information about how family conflict can lead to court battles.
Make your wishes known about whether you want to be buried and in what location. Or cremated and place or distribute your ashes.
These topics may be uncomfortable to discuss, but they are the practical way to deal with dementia and all the issues related to caregiving, aging, and health.
8 Creating a Memory Book
Creating a memory book for how to deal with dementia may seem like one more thing to do. But consider that this book is for your family and professional care staff.
Providing background about your life is essential so that your caregivers—whether family or professional—know your personal history and have a starting point for conversations. Reminiscing is a beneficial, activity for persons with dementia and their caregivers.
Gather photos of yourself and your friends when you were younger. Make lists of your likes and dislikes.
For example, foods you never want to be forced to eat and foods you love. Whether you prefer taking showers or a bath, your favorite type of music, the programs you enjoy watching on television, favorite actors, and movies.
Know that there will be a time when a person with dementia cannot share this information. For caregivers, having this knowledge helps them to provide care that supports needs and offers comfort and security.
9 Daily Journaling
Another way to deal with dementia is to keep a daily journal. This activity is beneficial for the person diagnosed and their family caregivers. Research confirms that journaling benefits mental health and stress by documenting thoughts and feelings.
For a person in the stages of early memory loss, having a notebook to refer to regarding the previous day’s activities can be very helpful. However, realize that keeping a journal is not practical when memory becomes seconds short in the mid to later stages.
For caregivers, this journal can also serve as a list of things to do and reminders—sort of like a personal calendar—that can help you organize life when everything seems out of control. Finally, for the family, having a journal that a loved one with memory loss created can be a source of comfort that shares the feelings of an elderly parent or a spouse through their health journey.
10 Maintaining Friendships and Social Activities
Last but certainly not the least important for how to deal with dementia is to maintain social activities that include outings and connections with friends and family for as long as possible. A loss of relationships is a concern that I frequently hear from caregivers of persons with dementia.
Caregivers tell me that friends and family stop visiting. While there can be many reasons, one must realize that a diagnosis of dementia and Alzheimer’s can be frightening and uncomfortable for people who aren’t sure how to respond.
Unless you are involved in the day-to-day care of a person with dementia, you are unlikely to know how to respond empathetically to repetition. Or know that reminiscing is an activity that can be done together. Or that visiting gives a family caregiver relief.
So my recommendation for maintaining friendships and social activities is for the person with dementia and their caregiver to write a letter—either individually or to a group of family or friends. Inform about the diagnosis and the hope for ongoing contact.
Family Caregivers Become Educators
It’s almost as if a family dealing with dementia has to educate everyone on the outside about the disease. Especially to put into words the importance of the relationship and continued visits.
In many cases, the family caregiver may have to create a visitors calendar and invite friends and family. As difficult as it may be for A family caregiver to lose a loved one, the transition is equally tricky for friends.
So it’s essential to focus on simple activities. Encourage walks, looking through photo albums, and any other activities that the person with memory loss can still participate in. Just because a person has memory loss doesn’t mean that they still aren’t there inside somewhere.
For more on helping friends and family learn How to Talk to a Parent With Dementia, listen to The Caring Generation Episode 26 and my interview with Dr. Stephen Post.
Dealing with dementia can be a long journey of many years. Being practical about an emotionally challenging and heart-breaking topic may mean that you need the encouragement of others.
Seek support and information as early as possible to have more options. Caregivers and persons diagnosed with dementia must be proactive in establishing relationships with others who can provide emotional and practical encouragement.
Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes in Pamela’s Online Program
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