How to Care for People with Dementia

When my father was first diagnosed with ALZ (Alzheimer’s disease) I’d just given birth to my youngest, so it was twice as terrifying to process the information and take action. Everyone in our family was petrified, really: after all, we’ve had two sons – both needing our full attention and commitment, only one income (I was on baby leave at the time so my husband was the only one working), and my father who needed our absolute focus and care. This overwhelming feeling of confusion, restlessness and fear got us spinning for a second; luckily, we’ve managed to go through it and now – we’re all functioning pretty great.

What is Dementia?

A decline in mental ability, dementia is a mental disease severe enough to interfere with daily life. From memory loss, impaired reasoning and judgment to failing communication skills and a deteriorating ability to focus and pay attention, dementia most commonly develops in older people, with Alzheimer’s being its most common type. Dementia is often referred to as “senility” or “senile dementia”.

To all of you who were caught in the midst of a similar situation, here are a few tips I believe you’ll find helpful in dealing with a person with ALZ/Dementia and organizing your life around it.

Dementia

Understanding the disease

Caring for someone with dementia is very specific; unlike “typical” diseases, this one can cause emotional pain to a patient if the situation isn’t handled correctly. The patients still retain the emotional capacity to connect to people and situations, and do remember their previously created emotional connections. Dementia consumes the mind which is why you need to be extra sensitive about the way you behave; a single wrong statement or action can cause intense emotional pain. 

I went to the doctor’s and got all the needed information; your parent’s MD is the best (first) point of contact for all questions you may have, so don’t be shy to ask. Inform yourself about the severity of the affected person’s dementia and how it progresses; also, make sure to fully understand the steps you’ll have to take to deal with it. That way, it’ll be easier for you to handle your responsibilities of a caregiver and the demented person will have a better quality of life. 

You need to be very perceptive when dealing with the patient. Focus on what the person feels rather than what they remember.

Ask simple, answerable questions

A demented person will most probably suffer the loss of their cognitive abilities progressively which is why you need to be careful when communicating with them. Avoid aggressive discussions or complicated, puzzling questions. Ask one question at a time, preferably those with yes or no answers. Refrain from giving too many choices or asking open-ended questions. For example, ask, “Would you like to eat soup or beans for lunch?” Keep it simple. 

Dementia

Listen with your heart and eyes, not just your ears

Be patient and watch for nonverbal cues and body language; if your loved one is struggling for an answer, it’s okay to suggest words. Make sure you listen for the underlying meaning and feelings. Don’t ever raise your voice or rush them; they will find it very humiliating and hurtful. Additionally, you may cause them to shut down completely and refuse to communicate at all. 

Don’t forget them, they won’t forget you

Just because your loved one isn’t living with you, doesn’t mean they don’t remember you – even if they’re suffering from dementia. It is important to connect with the person on an emotional level and make them realize they are very important to you even though you’re not with them 24/7. 

After having spent almost a year with us, we’ve put my dad in a home; home care in San Jose was our best option as they are amazing professionals and it’s a 30-minute drive from our house, so we can go visit often. With me going back to work and two young boys on our hands, we had no other option. I still think it was the best choice to make. With specialized help my dad is getting, his family (me, my spouse and the kids) are always cheerful to go see him and we never lack energy to show him love. We spend hours together on weekends – we talk, play, go through photo albums, we lunch together… it is always a happy time!

Accept that your role of a caregiver will be enormously challenging – emotionally, physically and mentally. The sooner you accept it, the easier will be. You’ll make it, I have no doubt.