When you first learn that a loved one has dementia, it can be a confusing and frightening time for everyone. You and your loved one may not know what to do or where to turn. The effects of the diagnosis reach far beyond the individual dealing with dementia; it affects family and friends as well.
Keep in mind that these feelings of being overwhelmed or confused are completely normal. It is also normal to be upset, angry, or sad about the situation. It is okay to take the time to process the new diagnosis—for both you and your loved one. Once you have had time to mentally deal with the diagnosis, you can start to make plans to adjust to the news.
Dementia Statistics in the United States
If your loved one has been diagnosed with dementia or Alzheimer’s disease, you are not alone. In fact, dementia diagnoses are becoming, unfortunately, more common. There are over 47 million people all over the world who have been diagnosed with some form of dementia. Another 7.7 million new cases are expected annually. In fact, someone in the United States develops Alzheimer’s disease every 66 seconds.
Today, there are more than 5 million Americans living with Alzheimer’s disease. It is the sixth leading cause of death in the United States. Roughly one-third of seniors will die from dementia or Alzheimer’s disease.
There are over 15 million people who serve as caregivers to those with dementia. In 2015, those caregivers provided roughly 18.1 billion hours of unpaid care for their loved ones. The financial burden of Alzheimer’s disease and other forms of dementia is staggering—costing the United States an estimated $236 billion.
Most of those who suffer from Alzheimer’s disease and dementia are over age 65—an estimated 5.2 million people. Unfortunately, dementia does not have a real cure, prevention, or even viable way to slow the progress of the disease as of right now. Research on this issue is ongoing.
Understanding and Dealing with Dementia
Dementia is a leading cause of dependency and disability for seniors, and it has a significant impact on their friends and family as well. The specific type of dementia that your loved one is suffering from can vary greatly, and treatment and care options will vary according to the type of dementia.
Dementia is an umbrella term that means cognitive function and the ability to perform even daily tasks is declining. Although these factors generally decline with age, they decline significantly faster and in different ways compared to normal aging. Most people automatically think of Alzheimer’s disease when they hear the word “dementia,” but there are other types of dementia as well.
Meeting with your loved one’s doctor or neurologist can help you answer many questions about your loved one’s condition. He or she can also provide you with additional resources in your local area as well.
Actions to Take Right After a Diagnosis
Receiving a dementia diagnosis is going to be a difficult time for everyone. However, there are actions that you can take to make the process easier in the long run.
1. Learn all you can
One of the first things that you should do after a loved one has been diagnosed with dementia is to spend some time getting to know the condition. Realizing what is happening to your loved one can significantly help your caregiving abilities and coping mechanisms.
Caregivers should also learn about what they will need to do to provide good care to their loved one. You may want to consider in-home care options in your local area that specialize in dementia or Alzheimer’s disease. While you can provide care on your own at first, as the disease progresses, you will likely need additional help.
2. Get your loved one’s legal and affairs in order.
As the disease progresses, your loved one will not be able to explain their wants and needs regarding medical care, end of life care, burial needs, or financial affairs. This discussion with your loved one will likely be difficult, but it is important to talk about these needs right away—before your loved one is unable to do so later.
Your loved one may wish to alter his or her will. Again, it is important to do this immediately if he or she wishes to make changes to their will. An individual must be of sound mind to alter their will, which may mean that your loved one will be unable to change it later.
3. Develop a Care Plan
Everyone who is diagnosed with dementia requires different levels of care. Knowing who will provide care is an important step in dealing with dementia diagnosis. Careful planning now can prevent headaches and frustration down the road.
Caring for someone dealing with dementia on your own can be exhausting. Caregivers often forget to make time for themselves or their wellbeing when they are so focused on their loved one. Having in-home care help can increase a caregiver’s wellbeing, which ultimately makes them a better and more effective caregiver.
Caring for Your Loved One with Dementia
Caring for your loved one who has just been diagnosed and dealing with dementia can be difficult. Developing an understanding of what your loved one is going through will help you be a more empathic caregiver. Patience and understanding are the cornerstones of caring for someone with dealing with dementia.
The first change you will notice is likely to be an emotional one. Everyone handles news of a dementia diagnosis differently, but you may need to be prepared for an array of emotional responses, including:
- Sadness or depression
- Feelings of losing control
- Feelings of loss of independence
These emotional reactions will likely increase as the disease progresses as well.
Keeping a regular schedule will be important for your loved one, and it is best to implement that schedule as soon as possible to prevent problems with adjustment later.
It can be extremely frustrating to lose the ability to do tasks that you have been able to do for most of your life, and some people react violently when they realize that they cannot complete a specific task. Be aware that this type of reaction may happen and have a plan for if it does.
Changes in Middle-Stage Dementia
Your loved one may repeat themselves frequently or ask questions over and over. Be patient and kind in your responses.
You should also keep in mind the following changes that may occur in middle-stage dementia or Alzheimer’s disease:
- Ability to learn new things, people, or places is decreased
- Complex tasks become more difficult
- Daily tasks becoming increasingly difficult
- Withdrawal is common
- Balance is altered
- Gait is slowed
These symptoms are also common in those with mild cognitive impairment (“MCI”), which is a condition that may result in an Alzheimer’s disease diagnosis.
Preparing for Advanced Staged Dementia
As your loved one’s disease progresses, they may require almost constant care. Planning ahead for this day now can be extremely helpful. Keep in mind that as dealing with dementia progresses, your loved one’s ability to communicate may be robbed from him or her. If your loved one wants input on their future care, it is important to make those desires known immediately. If possible, your loved one may even want to write down their wants and desires regarding their care.
Taking Your Loved One’s Care Wishes into Account
The following questions deserve your loved one’s special consideration:
- Do I want to remain in my own home as long as possible?
- Is there a particular care center that I would prefer?
- In in-home care an option for me?
- Who will manage my finances when I am no longer able?
- Are there certain treatments that I would not be comfortable with?
Because dementia affects the memory and cognitive function, many of those diagnosed do well living in their own home as long as possible. Having familiar surroundings can be helpful to decrease anxiety and depression.
Planning for Safety in the Home
It is important to create a safe environment for your loved one at your home. Awareness of surroundings plummets during later stage dementia, which means that even furniture and décor that has been in the home for years can suddenly become a hazard. Be sure to move items away from high-traffic walking areas and remove tripping hazards as much as possible.
Cognitive awareness may also significantly decrease. This can mean that your loved one will no longer understand dates and times, or even locations. Wandering seniors can be a serious problem, so it is important to take precautions to prevent your loved one from leaving the home unsupervised if at all possible.
A Dementia Diagnosis is Life-Changing
After your loved one has been diagnosed with dementia, his or her life will never be the same. As a caregiver, your life will be greatly altered as well. Use the resources available to you, including educational resources, support groups, and alternative care options like in-home care, to make caregiving as easy as possible.