Alzheimer’s & Dementia Impacts — Actions for Caregivers

Alzheimer’s and related dementias touch the lives of us all.

Most people are either personally caring for a loved one with dementia or know someone who is living with dementia or caring for a person with dementia (or have it themselves).

It has become rare to not be affected by dementia.

Unpaid family caregivers are on the front lines trying to navigate the maze of balancing caregiving and work/life, learning about the latest advances, and doing what they can to care for themselves.

New information, hopeful research discoveries, and tools for caregivers appear almost daily.

We want to update family caregivers and give you some actionable items to help you on your caregiving journey.

Latest Dementia Statistics

The recent Alzheimer’s Association 2018 Facts and Figures report details the latest information in dementia prevalence:

  • Every 65 seconds someone in the US is diagnosed with Alzheimer’s Disease
  • 7 million people are currently affected in the US; of those 5.5 million are over 65
  • 1 in 10 people over 65 have Alzheimer’s (the greatest risk factor is age)
  • 2/3 of those diagnosed with Alzheimer’s are women
  • 1 in 3 people die from Alzheimer’s or related dementias annually
  • 20 years before symptoms appear the brain becomes damaged
  • Because Alzheimer’s dementia is underdiagnosed and underreported, a large portion of Americans with Alzheimer’s may not know they have it

You can see more in this video from the Alzheimer’s Association.

Effects on Caregivers of People with Dementia

Family caregivers providing unpaid care for their loved ones with dementia don’t regret their decision to care for family members in need. Unfortunately, that doesn’t mean they are free from consequences of being a caregiver.

Here are some interesting tidbits about family caregivers and how dementia affects them:

  • 1 in 3 caregivers are over 65 themselves
  • Among primary caregivers of people with dementia, over half take care of their parents
  • It is estimated that 250,000 children and young adults between ages 8 and 18 provide help to someone with Alzheimer’s or related dementia
  • National surveys have found that approximately one quarter of dementia caregivers are “sandwich generation” caregivers, caring for their older loved ones while also caring for their children
  • More than 6 in 10 (63%) Alzheimer’s caregivers expect to continue having care responsibilities for the next 5 years
  • 3 primary reasons caregivers provide care to a person with Alzheimer’s
    • desire to keep a family member or friend at home (65% percent)
    • proximity to the person with dementia (48%)
    • caregiver’s perceived obligation as a spouse or partner (38%)
  • 59% of family caregivers rated the emotional stress of caregiving for someone with dementia as high or very high
  • 30% to 40 % of family caregivers of people with dementia suffer from depression
  • Many caregivers of people with Alzheimer’s or other dementias provide help alone
  • 74% of caregivers of people with dementia reported that they were “somewhat concerned” to “very concerned” about maintaining their own health
  • 6 in 10 caregivers of people with dementia were employed while giving care
  • Many caregivers of people with dementia: went in late or left their job early, went from full to part time or cut back hours, took leave of absence, or had to leave their job to be a caregiver
  • In 2016, dementia caregivers reported nearly twice the average out-of-pocket costs ($10,697) of non-dementia caregivers ($5,785)
  • The measure of burden of a disease indicates that Alzheimer’s is a very burdensome disease, not only to the patients but also to their families and informal caregivers; the sum of the number of years of life lost due to premature mortality and the number of years lived with disability, totaled across all those with the disease or injury. Especially if the senior is on tube feeding.

Impact of Alzheimer’s and Related Dementias

Alzheimer’s disease is a degenerative brain disease and the most common cause of dementia. The characteristic symptoms of dementia are difficulties with memory, language, problem-solving and other cognitive skills that affect a person’s ability to perform everyday activities. These difficulties occur because nerve cells (neurons) have been damaged or destroyed.

The progressive accumulation of the protein fragment beta-amyloid (plaques) in the brain and twisted strands of the protein tau (tangles) eventually damage the neurons.

Basic bodily functions controlled by the brain, such as walking and swallowing are involved when nerve cells in the brain are damaged. Difficulty remembering names, dates or events, counting money or balancing a checkbook, changes in mood, and depression are early symptoms.

People in the final stages of the disease are bed-bound and require around-the-clock care.

Alzheimer’s disease is ultimately fatal.

Actions That Improve Living with Dementia

Maintaining the highest quality of life as the disease progresses is the best treatment at this time until improved medication management or a cure is found.

Interventions can improve the health and well-being of dementia caregivers by relieving the negative aspects of caregiving as well.

Here are science-based steps and interventions family caregivers and seniors with dementia can take:

  1. Exercise – both aerobic exercise and a combination of aerobic and non-aerobic exercise had positive effects on cognitive function according to research
  2. Cognitive stimulation – activities such as object categorization activities to reality orientation exercises (chores, folding wash, puzzles, word games, naming objects, arts, cooking, etc.). No single type of cognitive stimulation was identified as being more effective than another. Benefits to cognitive function lasted up to 3 months after cognitive stimulation activities ended. It is interesting to note that cognitive stimulation did not impact mood, challenging behaviors or ability to perform activities of daily living.
  3. Active management of Alzheimer’s and other dementias can improve quality of life for affected individuals and their caregivers such as: appropriate use of available treatment options, management of coexisting medical conditions, participation in activities that are meaningful and bring purpose to one’s life, connect with others living with dementia, becoming educated about the disease and planning for the future.
  4. Respite – planned, temporary relief for the caregiver through the provision of substitute care; examples include adult day services and in-home or institutional respite for a certain number of weekly hours.
  5. Home care support – getting help with instrumental and personal activities of daily living such as housework, shopping, cooking, medication management, bathing, grooming, feeding, toileting and transferring.
  6. Managing behavioral symptoms including aggressive behavior, wandering, depressive mood, agitation, anxiety, repetitive activity and nighttime disturbances.
  7. Finding and using support services such as support groups and caregiving training.
  8. Addressing family issues related to caring for a relative with Alzheimer’s disease, including communication with other family members about care, decision-making and arrangements for respite for the main caregiver.

Caring for Loved Ones with Dementia

Caring for a person with dementia is a duty family caregivers don’t regret. It can be fulfilling, exhausting, frustrating, maddening, joyful and a challenge you will be glad you accepted.

It is true that there will be days that are difficult as well as the days you will treasure. Getting all the help you can and learning as much as possible will make your journey a bit easier.

Care for yourself too so you can continue to provide care for as long as the person with dementia needs you.

2 thoughts on “Alzheimer’s & Dementia Impacts — Actions for Caregivers”

  1. When Major Neurocognitive Disorder goes on and on and on, but the patient is not considered hospice, how can caregivers get the help they need to rest? Respute seems to only be for end of life situations. At this rate, I may die before my husband!

    • Mary, there are many forms of respite before you need end of life caregiving. You can enlist the help of friends and family to give you a much needed break. You can also hire paid caregivers to allow you a small break or even a regularly scheduled time to care for yourself. There are also senior day programs that you can take your husband to while you take time away. We encourage you to seek out these options in your community.

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