11 Mistakes That You Might Make When You Care For Someone With Dementia

Dementia is a one-way journey. Today, there is no turning back for a person suffering from dementia.

And if the diagnosis “Dementia” has been pronounced in your family, prepare to change your life for years to come.

I’m not trying to scare you. Unfortunately, that’s how it is. And life will change not only for you, but for everyone around you.

Dementia is not an independent disease, it is an acquired syndrome (a complex of symptoms) caused by various organic brain diseases.

Dementia is not normal aging, it disrupts a person’s daily functioning. As a rule, not one, but several cognitive functions are impaired, and this impairment is not temporary, but persistent, lasting for a long time.

Your loved one is diagnosed with dementia. What can you start with?

Start with three main steps:

1. Accept the condition
2. Understand who is in charge now
3. Get a power of attorney with an extended scope of authority

1. Don’t torture yourself with questions like “Why me?” or “What did I do to deserve this?” Guilt is a common emotion, but it is unhelpful. Dementia is a biological disease, not a punishment.

Your task is to live here and now. Take it one day at a time. Anticipatory grief—mourning the future before it happens—can paralyze you. Focus on the challenges of today. The progression of dementia is unpredictable, and worrying about the final stages now will only burn you out.

Stay only in the present.

Does mom/dad need lunch? Make it.

Does mom/dad need to see a doctor? Take them.

Do mom/dad want to talk? Talk with them.

Image: re-cognition.center

The faster you accept the new condition of your close and dear person, the easier it will be for you to care for them, the faster you will understand that reality has changed, and the faster you will be able to adapt to the new reality.

2. Remember, on an airplane they tell us: put the mask on yourself first, then on the child. So, your task is to take care of yourself and your health. Now you are the main actor. If something happens to you, who will take care of your mother or father who suffers from dementia?

3. Many of our clients complain that they didn’t arrange power of attorney from their parent in time. A so-called general power of attorney will allow you to avoid various unpleasant situations related to your relatives’ finances and property. It will also allow you to manage mom/dad’s pension to pay for caregivers or a boarding home, for example.

What mistakes can you make caring about someone with dementia?

1. The “Oxygen Mask” Rule: Prioritize Your Own Survival

The most important and unforgivable mistake is ignoring your own needs, desires, and interests. You are probably constantly thinking:

• how to help your parent,
• how to organize the sick person’s life conveniently and safely,
• how to get this or that from the state,
• how to demonstrate exclusively your calmness and confidence to mom/dad and others.

Very quickly you will burn out emotionally and go from “I must” to “I can’t anymore.”

Your life hasn’t disappeared with the arrival of dementia in your relative. You still have work, various obligations, family, children. You still have hobbies, desires. You still want to enjoy life and get pleasure from it.

You absolutely need to leave something for yourself, some activity through which you will replenish your resources. Otherwise, you will burn out before your relative with dementia does.

Taking care of yourself is not selfishness at all. It is an element of care.

2. Stop Waiting for the Diagnosis to Change

Not accepting the diagnosis and searching for confirmation of its incorrectness. You can spend a lot of energy on this and still have to accept it sooner or later. Better sooner, so you’ll have more time left for full communication with mom/dad.

3. Trust the Medical Protocol (Don’t “DIY” Dosage)

You took mom/dad to the doctor, therapy was prescribed. Therapy for dementia is taken for life. Yes, it needs to be adjusted. This may take some time.

But trust the doctor (the main thing is that they are competent). Don’t cancel medications, don’t change dosages on your own. By doing so, you can provoke a deterioration of the condition.

4. Secure Legal and Financial Documents Immediately

Go through all your parents’ documents, especially financial ones. Settle issues with real estate and other matters. Don’t leave this for later. You may face the fact that some documents are lost or hidden so well they can’t be found, they need to be restored, and it’s difficult to do this because of the sick parent’s physical condition. Start with a visit to a lawyer.

5. Avoid Social Isolation at All Costs

Don’t isolate yourself from society. Continue communicating with friends. Write on social networks, post new photos. Social isolation is a direct path to personality degradation.

6. Monitor Your Own Mental Health Statistics

Don’t neglect your mental health. Now you are at risk. You may need to speak to your doctor about medication for anxiety. Take care of yourself.

7. Build a “Village” of Helpers (Don’t Hide the Disease)

Don’t leave yourself alone with your parent’s dementia. Talk about it with relatives, close and distant ones, with friends, yours and your parent’s, with acquaintances, neighbors.

You will definitely need help and helpers. If help is offered to you, don’t refuse it, accept it with gratitude.

8. Abandon Logic: You Cannot Win Arguments

Don’t try to prove anything to a sick person. It’s useless. Logical thinking is impaired. You may hear various accusations directed at you. And it’s very difficult not to take the negativity. So don’t waste time on proofs.

Trying to reason with a person with dementia about clutter often leads to aggression. Instead of asking for permission to remove unsafe items, try to remove them discreetly when the person is distracted or sleeping. If an item is not a safety hazard, pick your battles and let it stay.

9. Schedule Mandatory “Respite” Days

You must have days off. At least once every 2 weeks you need to go somewhere: cinema, exhibition, concert, just a walk in the park. Your life continues.

Don’t allow yourself to sink into apathy! Any attendance at events gives new emotions, new impressions, a new picture.

10. Aim for “Good Enough” Care, Not Perfection

Forget about perfectionism. Caring for a patient with dementia is constant and increasing stress. A person with dementia can live 5, 10, or more years. And die from concomitant diseases. So you need to conserve strength for a long time. You don’t need to do things maximally well. You don’t need perfection. Do only what’s necessary, for example:

• medications on schedule,
• normal living conditions (clean, warm),
• balanced sufficient food (not necessarily organic or gourmet cooking),
• comfortable seasonal clothing,
• a benevolent caregiver.

It’s not necessary to wash the floor daily or regularly wash curtains. Much more important are fresh air and supply of water, fruits and vegetables, hygiene products, medications – this is the necessary part of care.

11. Stop Trying to Pull Them Back to Reality

The desire to keep mom/dad nearby, in this reality, is understandable. Therefore, many relatives begin to insist on various kinds of cognitive training, filling the patient’s day with different activities.

Image: re-cognition.center

Understand that you should not torment these patients with the desire to bring them back here. They are already scared and confused. You shouldn’t constantly disturb them even more. Don’t try to return a person with dementia to your reality. Don’t expect from a person what is no longer characteristic of them.

Now the main thing is to give a sense of security and calm.

Don’t isolate the sick person, involve them in household chores, offer only what is within their strength and interesting to them.

Dementia is a terrible illness. It requires enormous courage, wisdom, patience, and a lot of love from the caregiver.

Take care of yourself.