Alzheimer’s – It Impacts More Than Just the Patient

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This month is Alzheimer’s awareness month, and I’m going to focus my blog on someone who is often forgotten in the battle of this awful disease – the primary caregiver. We’ve all heard the preflight briefing on an airline when the flight attendant says that we should put our mask on first before helping our children with their masks. It is often the case that caregivers forget that they must take care of themselves in order to take care of their loved one who has Alzheimer’s. We should be the ones that recognize the importance of caring for the caregiver and offer our help.

This disease is unique in the broad effect it has on everyone associated with the patient. I don’t want to, even for a second, downplay the awful debilitating affect Alzheimer’s has on those affected. It robs them of who they are and of skills they developed over a lifetime. We have all seen the decline of an Alzheimer’s patient as the disease slowly progresses, but I think it is important to take some time to focus on the primary caregiver and the huge personal impact it has on them as they take care of their loved one. This huge service often goes unrecognized and unpaid.

Our country’s healthcare system reaps a huge benefit from those who give care, and many think we could do more to encourage and support caregivers. The National Association of Caregivers says –

The lack of support for caregivers is causing negative ripple effects for the health, financial, and mental well-being of America’s caregivers, with 12 million Americans reporting that caregiving has made their health worse and nearly 20 million reporting high levels of emotional stress due to caregiving. The economic impacts can be staggering. Nationally, unpaid care is valued at $600 billion annually.

600 billion is a lot of money. As far back as 1996, in my work advocating for older Americans, I pushed for legislation that would grant tax breaks for people caring for loved ones. Little has been done in that arena. but there are still lawmakers who see the value of compensating caregivers in some way. I think anything our government can do to encourage caregivers will be money well spent. I’ve always lobbied for laws that will support aging in place. Older Americans want to stay in their homes. They don’t want to be moved to institutions, and supporting them in their desire to age in place is a money-saving proposition. I encourage you to support legislation and regulations that support caregivers.

As I try to do in my disease focused blogs, I want to give you some actions you can take right now to help caregivers who are caring for a loved one with Alzheimer’s. I found an interesting blog on the Alzheimer’s Universe ( web page that discussed 5 things NOT to say to an Alzheimer’s caregiver. I thought it was very informative and would be helpful as we seek to help those who give care to Alzheimer’s patients. I’ll give you the short, condensed version, you can go to their website for the complete article and for other information and help Alzheimer’s caregivers.

Five things you shouldn’t say to an Alzheimer’s caregiver.

“You really look like you need some rest.”

Caregivers are often overwhelmed and don’t have time to care of themselves, but they don’t need to hear how bad they look. What would help is to take action. Offer to help. You will see this hint a few more times.

“I know your mom would have been thankful for all your help, she was such a lovely person.”

Referring to the Alzheimer’s patient in the past tense is disrespectful to both the patient and the caregiver. While the personality of the patient has often changed, the caregiver is still helping a person that needs their love and help.

“On a spiritual level, just know that God will never give you more than you can deal with.”

It’s not uncommon for caregivers of those in the later stages of Alzheimer’s to feel that they are taking on more than they can handle. Try not to give a caregiver reason to doubt their spiritual source on top of everything else they may be going through. Better to roll up your sleeves and simply offer to fill in for a few hours next week.

“How can I be of assistance?”

This question goes hand in hand with the, “call me if you need anything” statement. You are putting more work on the caregiver by asking them to find out what you can do, what your schedule is, and how willing you are to really help. A better approach would be to ask the caregiver about their tasks – what things takes the most time, what is the hardest for them to do? Then tell them what you can do, when you can do it, and set up the time and day when you will be there. Be sure and leave a phone number in case schedules change.

Making small talk and avoiding the huge burden that the caregiver is carrying.

Don’t avoid the thing that consumes most of their time. Let them know that you care about them. Action statements like these can really help:

  • “Can I help by driving to a medical appointment next week?” 
  • “I’m available if you would like to talk about it.”  
  • I can help with house cleaning once a month on any Saturday
  • “Please tell me how you are really feeling.”

These are things that are positive and immediate forms of help to the caregiver.

I think that one of the deepest forms of love is giving care to someone who needs our help. I hope that as we strive towards a cure for Alzheimer’s, we also recognize the burden of the caregiver and strive to lighten their load through legislative and personal positive actions.

Best, Thair

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