The art of caregiving- Understanding dementia

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“The person with dementia may look the same and, at times, may sound and act the same but they are no longer the same”- Nataly Rubinstein.

Dear friends,

I was looking for some information on dementia (a comment from a co-blogger got me interested, thanks to her) when I came across this amazing book,”Alzheimer’s disease and other dementias The caregiver’s complete survival guide” by Nataly Rubinstein. She is a licensed clinical social worker and a certified geriatric care manager specialising in Alzheimer’s disease and other dementias. She was a caregiver herself for her mother who lived with dementia for 16 years. Check this out to know more.

When we talk about dementia, we think of memory loss and some disoriented behaviour, but I realized there’s much, much more to dementia and giving care to a person with dementia. I wish I had known all this when I was a caregiver myself; I could have done a better job. Here are some takeaways from the book I thought I can share with you:

Dementia is a progressive, irreversible brain disorder. Over time, the person with dementia will need total care, which means round-the-clock, hands-on care. It’s a full-time job. Caring for a person with dementia will affect your social, financial, emotional and personal relationships. However, it’s not all gloom and doom; with sufficient education and understanding, you can be a successful caregiver. You will need to

  • know yourself and what you’re capable of handling.
  • learn all you can about dementia.
  • change your mindset
  • find new ideas and tools to help both of you maintain a sense of normalcy.
  • adapt your communication skills
  • have loads of patience and sense of humour.

Diagnosis

Dementia is not always about memory loss alone, it involves behavioural changes. On the other hand, all memory loss is not dementia. Some of them are reversible. So getting an accurate diagnosis from a neurologist who specialises in dementia is of utmost importance.

Medication

There is no medication that can reverse or stop the progression of dementia. Medication may only slow down the progression, but there is no conclusive scientific study that shows the effectiveness of any memory medication. Medication, therefore, is not the only answer. Sometimes the best medication is education.

Knowing the disease and its progression

  • A person who has dementia is not intentionally being difficult; he is just trying to make sense of his world as his brain undergoes changes.
  • A person with dementia may not always have the ability to process the information necessary to make a good decision.
  • He will avoid anything that is out of his sense of “normal”, perceiving it as dangerous.
  • He lives in the ‘here’ and ‘now’. He’s comfortable once his current needs are met.
  • For the person with dementia, future events cease to exist.
  • As the disease progresses, he may no longer recognise you or even himself when he looks in the mirror.

Understanding behavioural problems

  • Isolate the behaviour.
  • Identify the triggers. Rule out medical (infection, dehydration, etc.) or environmental (loneliness, lack of social support,etc.) causes.
  • Look for warning signs/ patterns (for eg., the time of day, sleeplessness, etc.)
  • Figure out what makes it worse and what improves it. For example, you can’t reason with a person who has dementia; it will make a behavioural problem worse. It’s better to divert or refocus whenever it happens.
  • Make him feel safe and secure. He is anxious because he’s unsure of what is expected of him.

Changing your mindset

  • The challenging behaviour may not always be the real problem, it may be a lack of understanding as to how to deal with it.
  • Ask yourself if your expectations are reasonable, from a person whose brain is undergoing a lot of changes.
  • Forget how you communicated with the person in the past. He is not the same anymore.
  • If you had memory loss, how would you like to be treated? Treat him the same way.
  • As I have mentioned in my earlier post on self-care, ask for help. Caring for a person with dementia may cause isolation due to the stigma associated with it. The more you isolate yourself and don’t ask for help, the more you give people who would like to support, a reason not to help.
  • Do not compare yourself with others. Your loved one may be quite different from someone diagnosed with the same condition. Both of you are in a unique situation, which requires practice to handle.

Better communication

  • Focus your full attention on him and avoid distractions.
  • Listen to his needs through feelings, rather than facts.
  • Since a person with dementia tends to “time travel”, use familiar names to help orient him.
  • Give directions instead of asking. (say, “let’s go to…. instead of “do you want to…?”
  • Ask him to do one task at a time.
  • Remember KISS – Keep It Short and Simple. Break down long sentences into short ones and convey each message after a pause.
  • Be specific; a person with dementia will take what you say literally.
  • Use a gentle, relaxed tone; a person with dementia is hypersensitive to your facial expression, the tone of voice and body language. He will pick-up and mirror your reaction.
  • Keep the person active and engaged. Encourage him to do as much as he is able to. Feeling useful and contributing will give a sense of joy and fulfilment.
  • Use humour; humour can defuse a challenging behaviour. Though hard to implement, it’s a win-win situation since it helps both of you relax.
  • A person with dementia will be repetitive because he is anxious, which shows that he’s still involved and wants to participate. As dementia progresses, he’ll lose interest and stop asking. Then you may wish to have those moments back, which you would never get. Try to reassure your loved one and use a calming tone.

The onset of dementia triggers a struggle between the caregiver who wants a normal life and the person with dementia who’s trying to hold on to his normal life. No matter what you’ve gone through in life, caring for a person with dementia will likely be the most challenging experience you ever have.

As the disease progresses, everything from going to the doctor’s clinic to daily activities like bathing, toileting, eating, sleeping becomes a struggle. You might need to use perseverance, creativity, bribes, guilt, lies and whatever it takes to get them to do what has to be done. You are not being manipulative, but doing it to help your loved one.

Everything in life is difficult until you learn how to handle it. Remember when you first started cycling, swimming, or even your first job. With guidance and practice, it gets easier. And it will make you a better person as you travel with your loved one in the journey of caregiving.

Do you know anyone who gives care to a person with dementia? Please share with them.

Have you read my other posts on caregiving: part Iself-carecaregiving for cancer. What are your thoughts? Please comment:

 

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