Caregiving for Someone with Dementia: 15 Things You Must Consider First

✨ At a Glance
This personal guide covers 15 important things you should consider before you commit to caregiving for someone with dementia. We address logistics such as legal, financial, and shelter matters; the emotional toll such as grief, patience, and understanding; and the physical demands such as safety, health, and home care. We also look at the need for respite care and self-care, learning to be flexible with your plan of care for the patient, your pre-existing conditions that might impact long-term caregiving, frequently asked questions, and resources to learn more. The information is based on personal experiences and research of the author.

You know your parents are getting older and you’ve even observed some memory-related issues. But are you prepared when a doctor says your parent has Alzheimer’s Disease and it is progressing quickly?

I’ve been through this a few times with loved ones and, as a result, I want to share some raw and honest things I’ve learned as a family caregiver for loved ones with dementia, cognitive decline, or Alzheimer’s Disease.

I’m not going to spend a lot of time researching for this article. I do that for many other articles — but this one is just me writing for you. At the end, I will share some sites and resources where you can get more information, but I hope my personal experiences will provide you with helpful guidance.

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Myth-Busting: Caregiving for Someone with Dementia

This is kind of like a myth-busting article because I’m going to share some things you may not have considered. I feel like there is an expectation that we have about caregiving for our loved ones, and then there is a reality.

We also have familial expectations that run through generations and can interfere with our decision-making and a clear mind. Times are different today. We might not be able to provide caregiving like our ancestors did in the past.

We don’t always think of everything that needs to be considered when making a life-altering decision like this.

Your loved one probably hasn’t been hiding knives before.

Your loved one probably hasn’t been assaulting you before.

I hate to say it, but your loved one probably hasn’t been fecal-smearing before. (One study reported as many as 25% of patients with dementia will demonstrate this behavior.)

I doubt if your loved one has been telling the police or Adult Protective Services that you are hurting him/her either, right?

Does your loved one have a history of stealing? Wandering? (As many as 44% of patients with dementia will wander, increasing the risk of falls, injuries, and fractures, as well as going missing.)

Does your loved one have a history of saying you stole something?

All of these things are possible as these horrible diseases progress.

Any kind of dementia will likely change the personality of your loved one and leave you staring at someone you don’t know anymore. Sad, I know.

But who is going to tell you these things? More than likely, what will happen, is your loved one will end up in the hospital from a fall. Or end up in a police station for stealing. And before your loved one is released, you’ll be assigned as the caregiver.

Or, you might volunteer for the job. Afterall, it’s your loved one. But you will not have time to carefully consider how caregiving for someone with dementia is going to impact your life. And truthfully, whether you can do it or not.

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15 Things You Must Consider Before Deciding to Provide Caregiving to a Loved One with Dementia

I have provided care for terminal loved ones on-and-off for years. My mother instilled this in me at an early age when my grandmother moved in with us because of Early Onset Alzheimer’s. Most recently, my younger sister had Early Onset Alzheimer’s for 7 years and passed away at the young age of sixty-three.

These 15 important things you must consider before deciding to provide caregiving to a loved one with dementia are based on my personal research, experiences, and reflections.

Not all of my family members have had a type of dementia, but these horrible neurological diseases require special consideration when you are possibly going to commit to caregiving. I hope you will find my words helpful.

1. Financial Responsibilities

Caring for a loved one can be financially draining for you and your loved one. There are many things to consider to protect both of you. Patients with dementia can live for a very long time and their needs can change quickly since it’s a progressive disease. Be sure to seek advice early on with Medicare and Medicaid; and understand the difference.

Someone may need to pay for medical supplies and in-home help. Or, it might become necessary to put your loved one in a memory care facility that can cost thousands per month. There is a significant difference between memory care facilities that are privately paid and those that are paid by Medicaid. Have a financial strategy in place before you commit to caregiving.

And make sure you have a HIPAA waiver signed early before your loved one is declared to be incompetent to make decisions.

Additionally, it is HIGHLY beneficial to consult with an Elder Care attorney as soon as possible. Enough said.

2. Your Other Responsibilities

Sandwich generation caregivers are growing by the day. You still have grown children in your home, or even younger children. Your parents are becoming more needy and your significant other has health problems. Your job is a high-demand job that keeps you stressed all the time.

And the cherry on top comes in the form of perimenopause, menopause, or post-menopause. Are you genuinely ready to commit to caregiving for someone with dementia? Think about it carefully.

3. Where Your Loved One Will Live

With you, their own home, in a long term care facility? These are major decisions that are impacted by lifestyle, needs, finances, accessibility, level of progression, and so much more.

Have you considered multigenerational living arrangements? There can be financial benefits to this lifestyle. But is everyone in your family prepared to make lifestyle changes as the person with dementia progresses?

There are Continuing Care Retirement Communities that can sometimes meet the needs of you and your loved one. They provide support when needed, including therapy for you, and assistance as the dementia progresses.

Consult an Elder Attorney and social worker to help with living arrangements. Many local health departments have social workers who can help, or you can reach out to your Local Department of Aging. They have advocates who help, as well.

You might not have clear options, but do the best you can do and make sure you consider changes that need to be made in your loved one’s home if they plan to age-in-place.

It’s not easy to make these decisions, consider what might make you both feel at ease. Visit Memory Care facilities if that’s an option. Choose carefully. Enough said.

4. Respite Care for You

You simply cannot do this alone. You might want to, or think you can. Many of us do. But caregiving for someone with dementia is exhaustive and emotional.

Will your family, friends, spouse, adult children, neighbors, church family, advocates, or professional caregivers be available and willing to help? Even when things get complicated? Because they will get complicated. Remember, these are long-term progressive diseases.

It’s important to develop both short-term and long-term plans for respite care. Don’t be afraid to ask for help and schedule it regularly. You will need time for self-care in whatever form works best for you.

Oftentimes, your Local Department of Aging will offer assistance with respite care so check in with them.

5. Understand Dementia Will Change Them

Conditions like dementia and cognitive decline do not just affect memory. In fact, each type of dementia can affect the patient in very different ways. They affect personality, judgment, impulse control, emotional regulation, and more.

Dementia profoundly alters personality by damaging brain regions controlling emotions and social behavior, often causing apathy, irritability, aggression, social withdrawal, paranoia, and anxiety.

In other words, at some point during the progression you may not recognize the person they’ve become. Be prepared. Learn as much about the type of dementia you’re dealing with as possible.

6. Pre-existing Mental Health Conditions

Do you have pre-existing mental health conditions that will compromise your ability to care for your loved one? Your mental and emotional health will be tested. I promise. You will develop hypervigilance, anxiety, emotional exhaustion, sleep disruption, and more.

If you’re constantly on edge, that matters.

Guilt will try to lead you. You may feel, “I should do more,” “They took care of me,” or “What will people think?”

Guilt is emotional. Capacity is practical. Don’t confuse the two.

This isn’t about abandonment. This is about capacity.

Love does not require self-destruction.

If your mental health, physical safety, or family stability is at risk, it is okay to escalate care beyond you. Choosing a facility, or even asking for help, is not failure. Sometimes it’s leadership. Be honest about your mental and emotional health before you agree to caregiving for someone with dementia.

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7. Pre-existing Physical Health Conditions

Do you have pre-existing physical health conditions that will compromise your ability to care for your loved one? As time changes your loved one, you will get older and time may change you, as well. Talk withyour doctor and be honest about the situation.

Arthritis? Diabetes? Fibromyalgia? Any kind of autoimmune disease is progressive and you can expect to have challenges as you age. Same with cardiovascular and respiratory diseases.

Again, this is one of those times in life when you might want to say YES but it’s not a wise decision. Women in midlife tend to say yes to things for the wrong reasons. This is simply not the time.

8. Flexible Care Plans

Caregiving for someone with dementia is not a sprint. Forecasting what 6, 10, 12, or 15-years down the road looks like can be difficult, but the truth needs to be discussed. If physically healthy, your loved one can live a very long time on a dementia or Alzheimer’s journey through all the stages of decline.

Create an End Plan that is flexible and able to be shifted based on your loved one’s progression in the disease.

When the disease escalates, what’s the next step? Home care? Memory care? Hospice care? Don’t wait until crisis mode to think about next steps and make these decisions. Be flexible with your care plans and be prepared to shift as needed.

9. A Self Care Plan

Take care of yourself first. You cannot take care of your loved one if you are not taking care of yourself. There’s no shame in asking for help and handing off responsibility to others. You matter, too.

Be sure you are able to walk away for a break, talk to someone, cry, document, and reach out for help. Don’t feel guilty. Pray and have faith. Remember that this situation is kind of a degenerative situation for the caregiver just as it is for the patient. You need your strength, rest, mental health, and to be able (and willing) to reduce as much stress and grief as possible for yourself.

10. Plan for Help from the Beginning

Understand from the start that you will need to eventually get help for a declining patient. The patient’s needs will change over time. Be prepared to take advantage of home health care or nursing services. Bring in hospice when the time comes. Bring in occupational therapists, physical therapists, and speech language therapists if your loved one qualifies for these services. Accept the help with bathing. Do not feel bad if you cannot do it all.

Talk to your loved one’s doctor(s) to get referrals for these services. Check with your local Department of Aging about any grants, programs, or services they offer. Have a social worker come into the home to evaluate the living situation after a diagnosis is made and along the way as the disease progresses.

11. It Can Impact Your Household

Your spouse. Your children. Your nervous system. Your sleep. Your mental health. Your peace. Your marriage. Your future plans. Your work. Your business. Everyone in the home feels the shift when you are caregiving for someone with dementia. The energy in your home shifts. It can be devastating. Do you have a plan for 10-years down the road? Or maybe 17-years down the road? Yes, these horrible diseases can slowly impair your loved one over a number of years.

12. Accusations and Paranoia

It’s common for dementia patients to accuse loved ones of stealing, truly believe things that aren’t real, or even lie and truly think it’s the truth. Watching someone lie and fully believe it can be challenging to say the least.

The accusations and paranoia can lead to serious emotional outbursts that take your breath away or engage you in screaming debates. It’s the disease, not the person, but it still affects you emotionally. Are you genuinely prepared to handle these situations? What happens when a situation escalates? Be honest.

13. Safety Can Become an Issue

You may eventually need to hide knives, lock doors, disable stoves, or monitor wandering. As the disease progresses, if safety feels unstable, that’s a sign the level of care may need to increase. You can love someone deeply and still not be equipped to manage advanced dementia alone in your home.

Have you considered what happens when safety becomes a concern? Or what happens when you’re afraid in your own home?

It can get to the point where all you can do is hope to survive. This is why you need an extensive, long-term plan that is well-researched and thought-out.

14. Legal Documents Must Be Handled Early

While your loved-one still has mental capacity, it’s important to seek the advice of an Elder Lawyer to secure a durable power of attorney, medical power of attorney, living will, and asset protection planning. You may want to consult a lawyer about future do’s and don’ts, and long-term planning, your loved one will need to attend meetings to address the many issues these documents address. Waiting too long creates serious complications that can take years to resolve.

15. Anticipatory Grief

You may or may not know the term anticipatory grief, but it has all the same characteristics of post-lost grief. It consumes you while your loved one is still here. It’s the profound sense of loss, sadness, and anxiety experienced before an impending death or major life change, such as a terminal diagnosis, chronic illness, or caregiver burnout.

Symptoms include depression, anger, anxiety, guilt, and behavioral changes like rehearsing the loss. Yes, these are symptoms that you will experience, possibly long before you say goodbye to your loved one. It drains you emotionally. Coping involves seeking support, acknowledging emotions, and self-care.

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Frequently Asked Questions about Dementia Care

Some of these questions are directly or indirectly answered in the text above; however, in case you are looking for specific answers to some of the most common questions about dementia care, I’ve included this section for easily scannable information. I hope you find it helpful.

Final Thoughts about Caregiving for Someone with Dementia

These are helpful online resources I’ve used to learn about dementia care:

I’ve also found many excellent articles through Google searches and, throughout this article, I’ve linked articles here on Sassy Sister Stuff that I have written.

This is a great Related Article that speaks to dementia from the perspective of a patient: If I Get Dementia: A Heartfelt Wish List for My Caregivers.

Finally, the most helpful resource I’ve discovered is a book by Nancy L. Mace and Peter V. Rabins you can get from Amazon that will help you immensely:

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias (A Johns Hopkins Press Health Book)

This is the type of book that you keep with a highlighter by your bedside, or in your reading nook, and highlight what applies to you and your loved one with dementia.

The information in this article is all very fresh and raw for me because my sister just passed away last week. I heard a new song the other day that had a line that perfectly reflected how I feel right now: “I only miss you when I’m breathing.” Someday all your worries and concerns will go away, so make the most of the time you have with your loved one and let it be good.

With light and love,
Susan

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