A Caregiver’s Guide to Understanding Dementia

Holly Clark

In this blog post, Holly Clark offers her perspective on caring for loved ones suffering with dementia based on her professional experience working as a Community Manager for FirstCare Nursing Homes in Ireland and her personal experience caring for a family member dealing with the disease.

By Holly Clark

Hundreds of millions of people in the world are living with dementia and the illness is becoming more of a social issue, particularly in western societies. The disease, or rather collection of diseases, is becoming more common and is the biggest cause of death among women in many countries.

For those of us who care for people with dementia, we need to understand what daily living is actually like for a dementia patient: What behaviors do people with dementia exhibit? What signs should you look out for, as a family member, carer, or medical professional? What does it feel like to have the disease? As caregivers, we need to understand the behavior of those with dementia so we can provide the support and empathy they need.

Dementia can be extremely frustrating

Most of us will have a relative who is living with dementia; my grandma is suffering from the disease. One of the biggest challenges for dementia patients and their caregivers is frustration.

For example, Ann, who is living with dementia, says that she struggles with her short-term memory and thus gets frustrated because she cannot recall simple things such as whether she has eaten, whether relatives have visited that day, or even some relatives’ names. There is also a tendency to confuse one relative with another, possibly from an earlier generation.

As a result, if you are caring for someone with dementia, be patient with them: they may not remember things instantly, or even at all. They may not remember who you are. You just have to accept this and not become frustrated. Your frustration could actually make their symptoms worsen.

Jane Byrne, relations manager for FirstCare Nursing Homes, knows a little about dementia. She recommends that if you notice someone, particularly if they are over 65, forgetting things or finding it easier to remember things that have long since passed, then it is perhaps time to go to the doctor. When dementia is caught early there are many more treatment options available.

Environment is key

People who have dementia often struggle when moved to a different environment. That was the case with my grandmother who for a long time denied that she “lived” in the care home that is now her home.

Those with dementia want a familiar environment and may be upset or angry by being placed in one that is new or different. Dementia experts advocate creating a “dementia-friendly environment” that provides a safe place and a good quality of life for sufferers.

The key is to discuss any changes in environment with your loved one in order to minimize their discomfort. For example, you could:

  • Decorate in a way that resonates with your loved one’s past
  • Put signs up to help them complete tasks and stick to a timetable
  • Minimize gadgets
  • Avoid involved patterns as this can startle or confuse your loved one
  • Have a garden as sensory stimulation from plants will do them a world of good
  • Build in sensors and alarms in case of falls

Be person centered

Every person who suffers with dementia is different and all families and caregivers are different. As a result, solutions and care plans need to be personalized to the individual. If your loved one enjoys something, and if it is safe and nourishing for them, then let them do it. If they do not like something and if it is not essential, then don’t force it.

Include your loved one in the decisions concerning their life — it is their life afterall. Person-centered care has become the norm across the care sector, but nowhere is it more important than in caring for those with dementia because these patients will already feel that their personal liberty is being compromised because of the disease.

These are just a few tips for understanding dementia, and if you only take one message from this article, take this: those with dementia are individuals. They have their own thoughts, feelings and wishes. Your care has to respond to this.

For more information about dealing with dementia, please visit www.dementiasociety.org and www.alzheimers.org.uk.

Thank you, Holly, for sharing your experience providing care to dementia patients.

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3 thoughts on “A Caregiver’s Guide to Understanding Dementia

  1. This was a fantastic read. I lost my grandmother on 12/20/18, who suffered from Dementia/Alzheimer’s. My parents were the primary caregivers for her, and I was the secondary. Reading through this, it helped me. There were so many things through out this blog that completely made sense to me. Things that I could 100% relate to. It can get very frustrating with having to repeat and remind. There were times that we would remind my gram to drink her water or finish her meal multiple times as well as reheating meals because she would forget to eat. We tried our best to keep her as independent as safely possible, and be supportive on the things that she needed help with. It’s heartbreaking to watch your loved one decline and lose who they were. You just have to remember who they were and never forget that they may not always remember your name, or who you are to them, the love is there. And remember although it may be hard at times… Be patient, and be kind. Lastly… YOU ARE NOT ALONE! This blog reminded me of that.

    • We’re so sorry for your loss, Jessye. Thanks for sharing your thoughts about this post; we’re glad it reminded you that you are not alone as so many families are dealing with the frustration, heartbreak and loss of loved ones to dementia. Take care of yourself.

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