World Alzheimer’s Month: The Costs of Caregiving for Dementia

Mature woman helps elderly mother handle financesVascular dementia, a cognitive decline typically caused by mild strokes that affect the supply of blood to the brain, significantly changes the way a person’s brain functions, both physiologically and emotionally. It is the second-most common type of dementia after Alzheimer’s, a condition with far-reaching challenges that are the basis for the observance of World Alzheimer’s Month each September and National Alzheimer’s Disease Awareness Month in November.

When my father was diagnosed with vascular dementia in 2009, it was shocking news. Living away from my parents, I didn’t see the signs as clearly as my mother and brothers did. Symptoms of vascular dementia include confusion, disorientation, trouble speaking or understanding speech, and vision loss. Depending on which areas of the brain are affected, memory loss may also be an issue. Vascular changes in the brain can coexist with changes linked to other types of dementia, including Alzheimer’s.

“Dementia” is a general term for memory loss and impairments in other cognitive abilities severe enough to interfere with daily life. Alzheimer’s, for its part, is the 6th-leading cause of death in the United States. Other common types of dementia include Parkinson’s, Huntington’s disease, Korsakoff syndrome, and Creutzfeldt-Jakob disease, to name a few.

Most types of dementia are progressive, where symptoms start slowly and progress over time. In mild (early-stage) Alzheimer’s, people generally can maintain their independence but experience memory lapses, have trouble remembering names, and may lose or misplace important items. In moderate (middle-stage) dementia, the person may confuse words, have increased anger or irritability, have difficulty telling time, and have an inability to recall things such as their phone number. There may also be other personality changes. In severe (late-stage) dementia, individuals lose the ability to respond to their environment and to carry on a conversation, even though they might still say words or phrases. Memory and cognitive skills continue to worsen over time, and eventually they come to completely rely on others.

The Challenges Caregivers Face

Because people in the late stages of dementia need help with every aspect of daily living, caregiving can be physically and emotionally exhausting. Many caregivers give up their own interests, hobbies, and activities to care for their loved one, which can result in isolation, anxiety, and even resentment. Nearly 40% of all caregivers report symptoms of depression, and some stop seeking medical help for themselves.

Like many partners whose loved one is diagnosed with dementia, my mother took on the role of caregiver without hesitation.

On average, caregivers for people with Alzheimer’s spend more than $5,000 a year caring for their loved one. In 2015, 15.9 million family and friends provided 18.1 billion hours of unpaid care to family members with Alzheimer’s and other forms of dementia. That care had an estimated economic value of $221.3 billion, according to alz.org (2016).

Like many partners whose loved one is diagnosed with dementia, my mother took on the role of caregiver without hesitation. She rarely asked for help early on, only turning to others when my dad’s health had critically declined. When he reached the severe stages, hospice services were obtained to help give my mother some relief. I’d like to think it helped mitigate some of the challenges she was facing.

Are you a caregiver for someone with dementia? If so, does this resonate with you? Here are a few questions to ask yourself. Do you regularly:

  1. Feel isolated from others?
  2. Have a sense of guilt or shame?
  3. Experience empathy overload?
  4. Find yourself worrying about finances?
  5. Feel a loss of independence?
  6. Feel helpless?
  7. Experience emotional or physical problems?

If you answered yes to most of these questions, you may be putting your own health at risk. I encourage you to seek support, be it from a trained therapist, hospice, or through the Alzheimer’s Association. Learn what kinds of respite programs are available in your community, and accept offers of help from friends and family. Seek out support groups and networks that are knowledgeable about dementia. Visit your own doctor regularly, and especially if you have increasing physical or mental health concerns. Get regular exercise and sleep.

In short, the best way you can care for your loved one is to care for yourself also.

References:

  1. Alz.org. (2016). Vascular Dementia. Retrieved from http://www.alz.org/dementia/vascular-dementia-symptoms.asp#symptoms
  2. Brophy Marcus, M. (2016, March 30). Some caring for Alzheimer’s patients make “startling” sacrifices. com. Retrieved from http://www.cbsnews.com/news/alzheimers-patients-caregivers-make-startling-sacrifices/
  3. Centers for Disease Control and Prevention. (2016). Leading Causes of Death. Retrieved from http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm

© Copyright 2016 GoodTherapy.org. All rights reserved. Permission to publish granted by Andrea M. Risi, LPC, therapist in Denver, Colorado

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Bennett

    Bennett

    September 21st, 2016 at 10:06 AM

    Many times we only think of the monetary costs when it is likely that caring for another with dementia is taking a huge toll on your body and your health. I think that many times those of us who have been in that situation find it hard to enjoy and live our own lives because we get so consumed by the lives that we are caring for. Somehow we seem to get lost in that equation.

  • alexis D

    alexis D

    September 21st, 2016 at 2:10 PM

    Do you think that a cure will be found in our lifetimes?

  • Tolly

    Tolly

    September 22nd, 2016 at 7:55 AM

    You can never understand the pain that this disease brings until your mother no longer knows who you are.
    It is at this point that the reality and the ugliness of the disease sets in and you understand that this is not going to be an easy journey for any of the family to navigate.

  • Rhett

    Rhett

    September 22nd, 2016 at 10:48 AM

    Getting involved with a group of people who are going through some of the exact same things that you are can be a wonderfully supportive move for you.

  • Andrea Risi

    Andrea Risi

    September 23rd, 2016 at 6:54 AM

    I appreciate your comments! Dementia is a difficult disease for everyone involved. Remembering to not take things personally is only one of the challenges. Having a strong support network and taking care of yourself is so important during this time. I do hope a cure is found!

  • Marty

    Marty

    September 23rd, 2016 at 10:19 AM

    When you don’t live close to the family member who is going through this and you don’t see the signs it is easy to want to say no, this can’t be happening and take it a little more lightly. But listen to what those who live closer to him or her has to say. They are probably around them a lot more than you are so they can start to see the subtle changes whereas it might all seem normal to you because you are not aorund them on a daily basis. Anyway, it is never anything to be ignored.

  • garrett

    garrett

    September 24th, 2016 at 8:16 AM

    It makes me so mad that there are actually families who face financial ruin just by providing basic healthcare needs for their loved ones.

  • Deana

    Deana

    September 25th, 2016 at 8:01 AM

    I always waffle back and forth about whether I would want to know ahead of time if this was a health issue that I was going to be confronted with in my future. In some ways I think yeah, I want to know so that I can live life to the fullest until it hits me.
    And then there is another side that says no, why do this to myself, always living in the fear and anxiety about when it is going to begin affecting me?

  • Zeke

    Zeke

    September 27th, 2016 at 10:54 AM

    I knew that Parkinson’s is a neurological disorder but a form of dementia? That’s a new one on me.

  • Charleen

    Charleen

    September 27th, 2016 at 3:51 PM

    Hospice nurses are such a blessing in these situations

  • Judd

    Judd

    September 29th, 2016 at 2:07 PM

    The one thing that I think that most people do not understand is that this disease not only takes away the memory that your loved one has, but often it will change their entire personality so you will hardly even recognize who they are anymore. It is like something else takes over and they become totally different from what you have ever known them to be.

  • Andrea Risi

    Andrea Risi

    September 30th, 2016 at 8:36 AM

    Zeke – You can read more about Parkinson’s disease dementia here: alz.org/dementia/parkinsons-disease-symptoms.asp

  • Andrea Risi

    Andrea Risi

    September 30th, 2016 at 8:44 AM

    Deana – I can relate, especially having had a parent with dementia. If you don’t want to get tested, the best you can do is take good care of your health. Here are some excellent tips: alz.org/research/science/alzheimers_prevention_and_risk.asp

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