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Being Prepared on the Dementia Journey

Thursday August 28, 2025

As a caregiver, receiving the news of a diagnosis of Alzheimer’s disease, Parkinson’s disease or vascular dementia for your loved one is one of the most difficult things to hear. This kind of life-changing news can be overwhelming and difficult to process.
Though each person’s journey through these diseases may look different, what we know for certain is that they are progressive. Some may have physical deficits long before they show major cognitive deficits. Others may be perfectly healthy physically but decline cognitively at a rapid rate. Since these diseases are progressive, it is important to approach care practically, forming a plan soon after diagnosis. This helps to avoid having to make difficult decisions quickly when in the throes of caregiving.
Understanding some general, informal stages of dementia can be helpful to plan care for your loved one and yourself. Too often, caregivers reach burnout or lose the ability to provide adequate care for their loved one before preparing a plan.

Below are some of the informal stages of these diseases that caregivers find useful to know. Those with dementia may not clearly fall into one category, therefore one form of care may work now, but may not be appropriate as the disease progresses. Planning is key for every eventuality.

In the earliest stage, you may notice your loved one:

• Losing items more easily
• Unable to retrace steps
• Forgetting names of people they see a few times a year or familiar words for things they use daily
• Confusing directions when traveling, getting lost or forgetting where home is
• Lacking problem-solving skills
• Losing ability to fulfill the role of their occupation

This is when preparations should begin. Consider what is best and safest for your loved one. Though it may seem they are safe to drive independently or be at home alone at this point, this is generally not the case. Taking independence from your loved one may be painful for the both of you, but it is a necessary realization that must be considered. Sometimes having the doctor or car insurance company assist in these conversations is a way to simultaneously empathize with your loved one and keep their safety the priority.
Get your support system in place now. Draft a plan for rotating visits to other siblings or family members and make a plan to share the care load. Consider and decide what your physical limitations are and what you can feasibly handle at home. Look at the financial picture and plan for all care options for both short-term and long-term. Validate and empathize with your loved one, as often they are still aware of their declining cognitive status and need support. Find a good neurologist and/or primary care doctor who understands the complexities of dementia to walk alongside you on this journey.

In the next stage, you may notice your loved one:

• Having mood swings or changes in normal behavior or personality
• Needing assistance with everyday activities like remembering to wash their hands after using the restroom or dressing appropriately for the weather outside
• Having memory gaps such as forgetting their address or where they worked for years
• Becoming more repetitive with their questions and quickly forgetting conversations or instructions

If you don’t have a care plan or caregiver support at this stage, there is no more time to delay to prevent eventual caregiver burnout. Anxiety may also be a big part of this stage because your loved one with dementia is living in a more confused reality now. You may find you need to partner with your doctor more to address anxiety and any safety concerns in your home.

In the next to last stage you may notice:

• Worsening of symptoms overall
• Your loved one has a completely different personality
• They may need more help with personal care or a simplified routine
• They may wander off or show signs of delusions or hallucinations, such as believing their reflection in the mirror is someone else or believing it is time to go to work, even if they retired years ago
• Conversations are more difficult and they lose the ability to make a complete sentence

At this stage, many caregivers must have support to be able to care for their loved one. If it is not already completed, now is the time to tour residential facilities even if that is not part of the immediate plan. Few ever plan to place a loved one in a residential memory care facility, but the reality is that a caregiver can only do so much before they are physically unable to care for their loved one and may experience deteriorating health themselves. Again, always plan for every eventuality.

The final stage:

• Finds the loved one disoriented most of the time
• Mostly nonverbal
• Requires constant physical assistance to complete any task
• They may just smile a lot, no matter what is said, or be constantly concerned or anxious without being able to verbalize what is bothering them
• They may lose the ability to swallow requiring an altered or pureed diet
• At this point, palliative or hospice care may be appropriate and/or nursing home care based on their physical abilities

While no one fits perfectly in a box with any of these stages or various diagnoses for memory loss, it is so important to be aware of decline in your loved one and acknowledge the significance of it. Get support early before you find yourself in a desperate situation with very few options to choose from. While this journey is always a difficult one, ensuring you are prepared and have good support will alleviate some of the pressures that come with caregiving.

For additional tips on how to further prepare for this journey, check out our other blog posts. Below, we’ve linked some good ones to read next. As always, please call us at 901-854-1200 for more guidance and resources. The dementia journey demands a team of support. Let us support you. Your loved one does not have to attend Page Robbins to participate in our caregiver support groups.

Accepting the Diagnosis 
Can my loved one still stay home alone?
Missing Person
Car Safety
Anxiety
Decision Making 
What to Do When You’re the Bad Guy
When to Consider Residential Care
Hospice Conceptions 

Written by Katie Fowler, Page Robbins Nurse