Dementia Care Guide: How to Care for Elderly Parents at Home

This article is part of a series on elderly care. The series provides important information about caregiving practices.

Caring for elderly family members with dementia at home can feel overwhelming. Still, with the right knowledge and strategies, you can provide effective dementia care. However, adjusting to the diagnosis can be difficult, and it’s important to understand that coming to terms with it isn’t going to happen overnight.

Whether your loved one has been recently diagnosed with this disease, providing proper care at home demands both emotional resilience and practical skills. It’s important to understand that dementia care requires patience, understanding, and specialized approaches that differ significantly from general elderly care.

If you want to start responsible dementia care planning, take time to learn about the condition and consider what the options for dementia care are going forward, including assisted living dementia care or a dementia care center.

Throughout this dementia care guide, you can gain insight into the various stages of the disorder and the relevant options for elderly care at home.

Understanding the 7 Stages of Dementia:

‘Dementia’ is a disorder that numerous diseases or traumatic brain injuries can cause. The term is most commonly associated with Alzheimer’s disease because it is the most common cause of it. From normal aging to severe dementia, understanding the progression of dementia is crucial for families providing dementia care at home.

The Global Deterioration Scale identifies seven distinct stages of cognitive decline, which become progressively worse as time goes by. Each stage of dementia presents unique challenges; learn more about the symptoms below:

Stage 1. No Cognitive Decline

At this stage, there are no memory problems or other symptoms of dementia. Your loved one functions normally in all areas of daily life, maintains independence, and shows no signs of cognitive impairment during medical examinations.

Dementia is rarely diagnosed at the earliest stages, because it progresses very slowly. Therefore, no special care is needed at this stage, but it’s an excellent time to establish healthy lifestyle habits that may help delay cognitive decline.

Stage 2. Very Mild Cognitive Decline (early-stage dementia)

During this stage, minor memory lapses begin to appear, such as forgetting familiar names or where they placed everyday objects. Keep in mind that occasional forgetfulness is normal, and that this can also be indicative of plenty of other mild health problems, including general age-related mental decline.

It will be a good time to start tracking behavioral changes. Making sure there’s no significant impact on their daily activities and they can still maintain independence.

Stage 3. Mild Cognitive Decline

At the third stage, dementia begins to make itself noticeable to other people, although it may not be apparent to the person suffering from it. Dementia care at home should begin as cognitive challenges become more apparent.

Increasing memory loss, inability to concentrate, and general disorganization are typical of this stage. Begin implementing safety measures and consider establishing routines that support daily functioning.

Stage 4. Moderate Cognitive Decline (mid stage dementia)

By the fourth stage, dementia is easier to diagnose. Clear-cut deficiencies appear during careful clinical interviews, and dementia care becomes essential for maintaining quality of life and safety.

It’s typified by a noticeable withdrawal from socializing, including periods of not responding or zoning out. Begin considering elderly care support and evaluate home safety modifications. These are some of the key characteristics of stage 4:

• Decreased knowledge of current events
• Difficulty with complex mental tasks (managing finances, planning dinner parties)
• Trouble traveling alone to new locations

Stage 5. Moderately severe cognitive decline

Persons at this stage require assistance with many daily activities, making comprehensive elderly care planning crucial. Dementia caregivers’ supervision becomes necessary to help loved ones with hygiene, dressing, and eating. They might not need to be moved to a community immediately, but they will certainly need a carer in the home. 

Some common signs of stage 5 include:

• Frequent bouts of intense confusion and delusion
• Difficulty choosing appropriate clothing for weather or occasion
• Memory loss, particularly regarding recent events, names, etc.
• Difficulty in problem-solving

Stage 6. Severe Cognitive Decline (moderately severe dementia)

Though in reality this is a late-stage form of dementia that will require full-time care, this stage is sometimes referred to as ‘middle dementia’. Memory difficulties worsen significantly, and personality changes may occur. Dementia care becomes intensive, requiring specialized elderly care strategies and often professional support.

Basic activities will be mostly impossible to carry out without assistance. Sleep issues will be observed, as well as a marked increase in paranoia and anxiety. 

If money isn’t an issue, family members may want to consider moving patients to a community or care home, but be aware that this can cause severe distress. A full-time elderly care at home may be a less distressing solution.

Stage 7. Very Severe Cognitive Decline (severe dementia)

The final stage of dementia involves the loss of the ability to respond to the environment, carry on conversations, and eventually control movement. Catatonia is common but underdiagnosed in dementia patients, according to research.

They may be able to communicate with noises, but these will be illogical. They may refuse to eat, thereby becoming malnourished. This stage is extremely taxing on informal caregivers, so professional care should be considered seriously. Doctors will need to come to assess the patient where they are, and they may recommend hospice care.

Dementia care planning for different stages

As awkward, painful, and emotional as these conversations can be, family members will have to make big decisions alongside their loved ones, because it is important to respect the dignity and integrity of the individual diagnosed with dementia. 

In the earlier stages of dementia, a combination of part-time or informal care and surveillance can help keep carers stay on top of things without always having to be present in person. Find out more about how indoor cameras like AlfredCamera can help provide adequate care.

At stage 4 (moderate cognitive decline) or below, moving a dementia patient out of their own home isn’t necessary. A part-time carer or family member will be able to provide adequate care for them. 

However, if the patient has already received a diagnosis, having these conversations earlier is better than having them later. At later stages, which are typified by anxiety, paranoia, and mood swings, moving the patient from their home can cause serious emotional distress. 

That’s why it’s also important to discuss power of attorney, guardianships, and other legal roles that the caregiver can take on during the early stages. As painful as it is to discuss these matters early in the diagnosis, it’s a necessary evil. 

Recognize that a loss of the capacity to discuss property is an eventuality, not a possibility. Gently ease them into discussions in which they can clearly state their wants and needs.  Ask them if they wish to make or update their last will, and arrange legal counsel if they do.

After stage 5, moving the patient out of the home may be considered, particularly if the caregiver is a family member with a full-time job. Have the doctor recommend communities and nursing homes.

At stage 7, hospice care will likely be necessary, particularly if the caregiver up until that point is unable to commit to 24/7 care. Ultimately, caregivers must try to respect the wishes of the patient, which is again why it’s important to have difficult discussions while they still retain capacity.

Don’t be afraid to ask the doctor for their opinion, even if it means being persistent. Invariably, caregivers will have to make difficult decisions on behalf of the person they are caring for. Consult with medical professionals, family members, and friends so that the input of others is respected.

What are the signs that dementia is getting worse?

Early signs of severe cognitive decline are insomnia, paranoia, and anxiety. Anxiety and other mood problems are fuelled by difficulty sleeping, so it’ll be obvious that both get progressively worse at the same time.

The most painful sign of worsening dementia is the inability to recognize loved ones. Very severe dementia is characterized by catatonic or near-catatonic symptoms, like losing the ability to walk and talk, at which point full-time care is a necessity and will more than likely need to be carried out by professionals in a hospice. 

In-Home Care vs Dementia Care Facilities

Both options offer distinct advantages for dementia care, and the right choice depends on your family’s unique circumstances, resources, and your loved one’s specific needs. Can a dementia patient be cared for at home? Yes, and many dementia patients will request being cared for at home for the remainder of their lives.

In-home dementia care allows individuals to remain in familiar surroundings. Hiring live-in carers may be necessary if informal caregivers are unable to dedicate themselves to 24/7 care, which is always a requirement of late-stage dementia care. This type of elderly care cost is more affordable than facilities.

Dementia care facilities, on the other hand, offer specialized dementia care with 24-hour professional supervision, structured activities designed for cognitive stimulation, and secure environments specifically built for dementia elderly care. The national average cost for memory care in the US is $6,935 a month.

Difference between memory care and dementia care

Services for dementia patients can be defined loosely as either ‘memory care’ or ‘dementia care’, though there’s significant overlap between the two. A ‘memory care’ facility is a care facility that has a specific focus on memory-related conditions. Staff there will be capable of caring appropriately for those with dementia round-the-clock. It can be thought of as more appropriate for earlier stages of the disorder, because it isn’t as medically intensive as a specialized nursing home.

‘Dementia care’ facilities like nursing homes with dementia programs are more relevant for later stages of the disorder. Patients will be able to access much more involved medical care to help them carry out basic daily tasks, like eating, washing, and so forth.

Medicare vs Medicaid for Dementia Care

Navigating dementia care insurance coverage can be confusing for families planning elderly care. Both Medicare and Medicaid provide important benefits for dementia patients, but they cover different types of services and have distinct eligibility requirements.

Caregivers or family members will need to check with the State Medicaid Agency where they live to find out what benefits are available. 

Medicare Coverage for Dementia Care

Some medical services and treatments:

• Doctor visits and specialist consultations
• Cognitive assessments and diagnostic testing
• Hospital stays related to dementia complications

Therapeutic services:

• Physical therapy, occupational therapy, and speech therapy
• Mental health services
• Cognitive assessment coverage

Limited home health services:

• Skilled nursing care at home (if homebound)
• Medical social services
• Durable medical equipment

Via https://www.seniorliving.org/memory-care/medicare-medicaid/ 

Medicaid Coverage for Dementia Care

Comprehensive long-term care:

• 100% of nursing home care costs for eligible individuals
• Memory care services in nursing homes and specialist consultations
• Room and board in skilled nursing facilities
• Personal care services and assistance with daily activities

Home and community-based services:

• In-home dementia care
• Personal care assistants
• Respite care for family caregivers
• Home modifications for safety

Medical services:

• All services covered by Medicare
• Additional medical services not covered by Medicare
• Prescription medications with minimal co-pays

Via https://www.seniorliving.org/memory-care/medicare-medicaid/ 

There are also plenty of additional costs that none of these organizations won’t cover. Free care for dementia patients in the US is, frankly, impossible to come by. Strong private insurance policies are the most reliable way to fund care. Financial help for dementia patients doesn’t exist on a universal level.

For more information on how to go about funding dementia care, contact the Alzheimer’s Association.

FAQ

What is the best care for a dementia patient?

In the early stages of dementia, part-time or informal care will be more than sufficient. Upwards of stage 5, when the patient’s condition starts to exhibit signs of moderately severe cognitive decline, full-time care either in the home or in a facility that provides memory care or dedicated dementia care will be necessary. Caregivers must try to be as cognisant of the patient’s wishes as possible. 

Can a dementia patient be cared for at home?

Yes, dementia patients can be cared for at home, and many choose to remain at home even in the later stages of the disorder. However, round-the-clock care will be necessary regardless of whether they are cared for at home or in a facility. Caregivers must navigate the wishes of the patient and the advice of the doctor. In the final stages, it may be deemed necessary to move to a hospice.

Can you die from dementia?

You can’t die from dementia, but the causes of dementia invariably lead to death. Dementia is an umbrella term referring to different diagnoses that cause cognitive decline. Most cases of dementia are caused by Alzheimer’s disease. Alzheimer’s disease isn’t ‘terminal’ in a conventional way, but it is progressive and incurable, meaning cognitive decline only worsens. The leading cause of death among Alzheimer’s patients is pneumonia, while fatalities caused by falls, malnutrition and infections are also common.

Conclusion & Resources

In 2005, a report stated that there is a dementia diagnosis once every 7 seconds. This was when 24 million people in the world had dementia. The report predicted that by 2020, 42 million people would have some form of dementia. In reality, there are now more than 55 million people living with dementia.

Providing dementia care for a loved one is both a profound responsibility and a privilege. While the journey ahead may seem daunting, remember that every moment of compassionate care makes a difference in your loved one’s quality of life. It’s a tough fight, but it’s never one that is fought alone.

Dementia Resources for Family Members

The Alzheimer’s Association has a large array of support resources available for everyone to access, including information, virtual events, and a helpline. Check it out here to find out more.

Elderly Care Series:
Choosing The Best Indoor Camera For Elderly Care
20 Essential Elderly Care Supplies for New Caregivers
The True Cost of Elderly Care at Home
Getting to Grips with Levels of Elderly Care
What Are the Types of Elderly Care? The 6 Care Services You Need to Know
9 Effective Elderly Care Tips to Help Your Parents in their Golden Years

Sources

• https://www.pennmedicine.org/updates/blogs/neuroscience-blog/2019/november/stages-of-alzheimers
• https://www.aegisliving.com/resource-center/the-stages-of-caregiving-the-changes-you-will-face-with-dementia/
• https://rockymountainassistedliving.com/memory-care-and-dementia-care/#:~:text=Memory%20care%20generally%20offers%20superior,substantial%20difficulty%20performing%20everyday%20tasks. 
• https://www.seniorliving.org/memory-care/costs/