It may have taken you months or even years to admit that your parent, partner, or someone else you love has dementia. And once you do, the difficult knowledge can change your life.
The future may look very different from what you had thought. Slowly, in ways big and small, your loved one will fade away. This can stir lots of big feelings, including anger and grief. Make your way through those emotions at your own pace until you get to acceptance.
That’s the first and most important step in the care process. Once they see that you've embraced the diagnosis, your loved one often will do the same. The new normal looks a lot less scary when you can tackle it together.
Where to Begin
As the decision maker, you’ll need to have an action plan in place. Here’s a checklist of things to consider.
1. Put together a team. This is a lot of responsibility for one person to take on. So pick out some close aides you can count on. Think about their strengths and weaknesses (physical and emotional), relationship dynamics, and other competing obligations. Knowing who’s who in your loved one’s inner circle helps with division of labor.
2. Trace a day in your loved one's life. Watch for what they can and can’t do for themselves. Doctors, rehab specialists, and geriatric social workers can help assess their needs. Determine how well they do the following things:
- Make meals and eat
- Bathe, groom, and use the restroom
- Dress themselves
- Walk and move around
- Pay bills and manage money
- Drive or navigate public transit
- Take their medications
- Do household chores
3. Keep a record of facts and figures. As their memory fades, details that were once at "top-of-mind" can be lost for good. Write those things down before they’re forgotten. Practical information is key, but so are sentimental things.
4. Pull together a complete medical history. Do you know all of your loved one's health conditions? All of their health conditions? What medicines they take? The names of all their doctors (primary care and specialists)? If they have allergies? Past illnesses, surgeries, treatments, and test results?
If not, it’s time to build a big file. You’ll need your loved one’s permission to get their health records, which are protected by HIPAA privacy rules. And you’ll want to sign a health care proxy to legally make medical decisions for them when they're no longer able.
Now that everything is computerized, you will want to create a file on your computer with all this information. It is a good idea to back up the file on a flash or thumb drive that you can carry in case you have to go to the emergency room.
5. Track their finances. A list of numbers you’ll need to hunt down includes:
- Account numbers
- Bank balances
- Investment holdings
- Insurance policies and payouts
- Total assets
- Outstanding debts
- Ongoing expenses
You’ll need to plan for the cost of care, and pay bills, arrange benefit claims, make investment decisions, and prepare tax returns. These can be touchy issues, since the person with Alzheimer’s has to hand over control and fully trust your judgment. And money can be a great divider of families.
Your loved one can sign over durable power of attorney, giving you the right to make financial choices on their behalf. You can also hire a trusted third party: a CPA, family banker, estate planning attorney, or financial planner. Don't forget to put this in the computer file and thumb drive. The data should include who has power of attorney, along with any advance directive or living will.
6. Put a legal plan in place. Find the latest version of their will and estate plan. Act fast if they don’t have one or it needs to be updated. They might also want a living will, a legal document that spells out their wishes for end-of-life care. It’s important to have clear instructions and decide who will put their affairs in order.
7. Fill a safe deposit box. Here’s what should go in it:
- Birth certificate
- Blank checks
- Car title
- Deeds (real estate, personal property, burial plot)
- Driver’s license
- Family trees or genealogy records
- Health insurance cards
- Insurance policies and cards
- Legal documents
- List of bank accounts
- List of credit, debit, and ATM numbers
- List of type and model of medical equipment
- Marriage certificate
- Medical records
- Medicare card
- Military service serial numbers
- Organ donor card
- Passport
- Personal property inventory
- Social Security card
- Stock certificates
Putting all these ducks in a row is a big responsibility, so tackle it a piece at a time. And while you’re looking after your loved one, remember to care for yourself, too.
What to Expect: The Early Stage
You're more of a care partner than a caregiver. Your parent, relative, spouse, or partner can still get dressed, take a shower, and do daily tasks. But they may need help to not miss appointments, remember certain words and names, and know when to take medicine. That can make it hard to know when or how to jump in with a hand.
Use this time to plan and practice. Get on the same page about wills, money, and wishes for long-term care. Focus on independence. For example, if your loved has trouble recalling a word, ask if it’s OK to help instead of blurting out the answer. Work as a team.
People with dementia can spend years in the early stage. Enjoy your loved one as much as possible, but save time for yourself, too.
Self-care tip: This is a good time to educate yourself on dementia and build a community of doctors, online or in-person support groups, therapists, and friends who understand what you're going through. If you plan to be the main caregiver, talk to friends, neighbors, and relatives about pitching in so you don't feel stuck.
What to Expect: The Middle Stage
Dementia doesn’t have clear-cut markers for each stage. But as more nerve cells in the brain become damaged, your loved one’s condition will worsen. This can be emotionally hard on both of you.
For your loved one, it means a loss of identity and independence. Bathing is confusing, as is dressing. They may be physically able but may have forgotten how.
Your loved one may have trouble remembering something that happened recently or follow easy conversations. In this stage, it's normal to forget to eat, lose track of time, and have sleep problems. These changes can leave your loved one frustrated, angry, or depressed.
This is when your role will shift from care partner to caregiver. You'll become the driver, chef, and -- if your loved one starts wandering away from home -- the warden. You'll answer the same questions over and over.
Try to have patience with the situation and yourself. Get help specific to your situation, like the Alzheimer's Association's "Caregiver Stress Check," Alzheimer's Navigator, and free e-learning workshops on everything from how to communicate to legal planning.
It's also up to you to provide daily structure. You may need to spend more time with your loved one and rebalance your own life. It may take some trial and error. It takes effort to design a daily plan. What does your loved one like to do? What can they still do well? Are they "sundowning," feeling more confused or aggressive during the late afternoon and evening? Build in lots of time for what used to be quick tasks, like showers, getting dressed, and eating. Be sure to leave room for spontaneous fun for both of you.
Self-care tip: Carve out some time for daily self-care and at least a 24-hour break once a week or a month. Sometimes it's enough just to take 5 minutes to breathe and remind yourself about all the things you do well.
What to Expect: The Late Stage
How long a person lives after their Alzheimer’s diagnosis depends on lots of things, including their age and health. On average, they live about 4-8 years. But others can live 2 decades or more. Your loved one may spend anywhere from a few weeks to several years in the final stage of the disease. This can be the most challenging phase.
Your loved one probably will have a hard time walking. They may need a wheelchair or may not be able to get out of bed. They also tend to get sick often and take a long time to get better. You or an aide may need to do a lot of lifting. Ask a nurse or physical therapist for tips.
You'll also have to move your loved one often to help their blood circulation, clean them, check for sores, keep track of when they poop and pee, and change adult diapers and bed pans.
Your loved one will need lots of help to eat and swallow. You may need to switch to soft foods, spoon feed them, and make sure they drink enough to avoid dehydration.
At this stage, your loved one may not be able to talk or express what they need. It's still important to connect on whatever level you can. It can be as simple as playing their favorite music, looking at photos, or just sitting quietly together.
With quality of life in mind, this is the time to consider full-time care, such as a nursing home or hospice.
Self-care tip: This stage may feel overwhelming and too sad. Your sense of humor may feel buried under guilt, anger, and grief. But dig it up. Laugh when you can. And share that laugh with your loved one. A little joy goes a long way.
Daily Care Tips for Someone With Alzheimer's
Day-to-day care will get more challenging as your loved one moves through the stages. Here are some things that could make keeping up with those things a little easier:
Set up a daily routine and stick to it. For example, brush your loved one's teeth after meals. Or always have baths in the mornings or evenings. Choose the most relaxed times of the day for these tasks.
Respect their privacy. Close doors and blinds. Cover them with a towel or bathrobe.
Encourage them to take on as much of their own care as possible. This will give them a sense of independence and accomplishment.
Keep their abilities in mind. Give them enough time to complete each task -- for example, brushing their hair or teeth.
Encourage and support them. For example, say, "You did a nice job getting dressed today."
Tell them what you’re doing before you do it -- "I'm going to wash your hair now."
If they can dress themselves, lay out their clothes in the order they should put them on. It’s best to give them clothing that’s easy to put on, with few buttons.
Encourage them to feed themselves if they're able. Serve finger foods that are easier to handle and eat, like chicken nuggets, orange slices, or steamed broccoli.
If eating with a plate and fork gets too hard for them, give them a bowl and spoon. You can also try plate guards or silverware with handles.
Don't force them to eat. If they're not interested in food, try to find out why. Treat them like an adult, not a child.
Your loved one might not need a complete bath every day. A sponge bath may be enough. But you can follow these tips when they do need a regular one.
- Always check the temperature of the water in the bath or shower.
- If you give them a bath in the tub, consider using a bath chair with handrails. Also, place rubber mats in the tub so they don’t slip.
- Keep the bathroom warm and well-lit.
- Remove or secure throw rugs to prevent falls.
If your loved one is too heavy for you to move easily, or if they can’t move themselves, you might need special equipment. Ask your doctor for advice on how to safely bathe them.
When it comes to hair care, you can try to wash your loved one's hair in the sink, which might help if they prefer baths to showers. You can also try using a dry shampoo. A visit to the salon or barbershop might be fun if they are able to take the trip there with you.
Use an electric razor for shaving to lower the risk of cuts, especially if your loved one is taking blood-thinning medicines.
Brush their teeth daily. If they wear dentures, clean them every day. Make sure the dentures fit properly, and check gums for sores or red areas.
If they won’t open their mouth, brush just the outsides of their teeth. Ask your dentist for advice on how to give good dental care. If they brush their own teeth, you can help by putting the toothpaste on the brush.
Install safety features that make it easier for them to go. These might include grab bars and raised toilet seats.
A bedside commode or urinal might help if they have trouble getting to the bathroom, especially at night.
Schedule routine bathroom visits to avoid accidents.
Tell the doctor if your loved one loses bowel or bladder control. Medication might help with these problems.
How to Make Your Home Safe for Someone With Alzheimer's
A few basic changes can help.
Put smoke detectors and carbon monoxide alarms on each floor, and test them to be sure they work. You might need to change the batteries every few months.
Don’t keep any space heaters, electric blankets, or other fire hazards in your home. If you must use them, follow the safety instructions and keep them on a sturdy surface away from rugs, curtains, furniture, or papers.
Cover electrical outlets you’re not using, and take care of any wiring problems. Keep lamps and other appliances near outlets so you’re less likely to trip on the cords. You can also use tape to secure them to the floor.
Mark any glass doors, windows, or furniture with a sticker or decal at eye level to make sure your loved one can see the panes clearly.
Make sure your home is well-lit. Night lights can help in bedrooms, bathrooms, hallways, and any areas your loved one might need to go at night.
Watch out for slippery or uneven surfaces, like throw rugs, tile, or rips in the carpet. Also, make sure any walkways are clutter-free.
Set your hot water heater to 120 F or lower. This will prevent burns from scalding tap water.
Post emergency phone numbers and your home address next to all the phones in your home. That way, you won't have to scramble for them when you need them.
Make sure that doorways are well-lit and free of clutter. Sensors that turn on outside lights when someone approaches the house can be a good idea.
Check that door locks work well and can open easily in an emergency.
Make sure stairs or ramps are in good repair. Also make sure to have a secure handrail.
Think about posting a “No Solicitors” sign for the front door. This will help keep your loved one's mind at ease.
In the kitchen:
- Put child-proof latches on cabinets and drawers that have fragile, valuable, or dangerous items.
- Lock up household cleaning products, matches, knives, scissors, and other hazards.
- Keep your loved one from using dangerous appliances. Install safety knobs on the stove. Disconnect your garbage disposal. Get rid of anything that doesn’t work properly.
- Remove fake fruits or decorations that look like food so your loved one doesn’t mistake them for something edible.
- If you keep medications in the kitchen, store them in a locked cabinet or drawer.
In the bedroom:
- Make sure your loved one can get in and out of bed safely. Consider putting mats on the floor next to the bed, as long as they’re not a trip or slip hazard.
- Place lamps or light switches near the bed, or use a nightlight.
- A monitoring system, like a baby monitor, can help you hear when your loved one gets out of bed or needs help.
- Make a clear path to the bathroom.
In the bathroom:
- Can your loved one safely get in and out of the shower or bathtub? If not, install grab bars on the inside and outside. Towel racks aren’t sturdy enough to be used as grab bars.
- Use non-skid strips in the tub or shower. A shower stool can also help.
- Install a safety frame, raised seat, or grab bar near the toilet.
- Put medications in locked cabinets or drawers. Throw out any that have expired.
- Lock up any bathroom cleaning products and small electrical appliances.
- Think about getting a single faucet that mixes hot and cold water, instead of separate knobs, to avoid scalds.
- Replace small bath mats with a large rug that covers most of the floor. Put an adhesive back on it to keep it from slipping.
