Why is dementia care particularly challenging?
Caregivers can share many stories to illustrate the various challenges a family faces. The process is a little different for everyone. The disease of Alzheimer’s (as well as other forms of dementia) is especially heartbreaking because of the memory loss and related behavioral changes affecting those diagnosed. Our personalities and intellect are at the heart of our identities. To experience and adapt to these changes can be emotionally draining.
The essence of these changes is what makes dementia care so specifically challenging. There are a lot of safety concerns that arise, and caregivers walk a fine line between independence and safety. At some point, as complex thinking is compromised, a caregiver must step in to make certain decisions and take over certain processes. This can be emotional and may be met with a lot of resistance from the person you are trying to help.
Just a few of the more challenging issues that dementia caregivers may face include:
- Driving safety
- Living alone, managing a household, managing personal care
- Paranoia, fear of caregivers
- Sundowners Syndrome and restlessness
- Refusals of care (refusals/arguing over bathing, changing clothes, etc.)
- Eating/nutrition issues (not eating, forgetting one has eaten and eating too much, inability to prepare meals or safely manage food)
- Agitation, anger, personality changes
Sundowners Syndrome and wandering are two potentially intense challenges for many Alzheimer’s caregivers, and they often go hand-in-hand. Sundowning refers to behaviors that take place around late afternoon and evening, including restlessness, agitation and increased confusion. Wandering may be a big component of this, especially as many with Sundowners Syndrome feel a sense of “needing to go home” or restlessness about something that needs to be done.
Where can you find support and answers if you are dealing with Alzheimer’s caregiving, especially the challenges of Sundowning, wandering and other behaviors?
- Join a support group or online group/forum of caregivers in like situations (explore support groups in your area to find out which groups you can identify with–people in your age group, relationship to the person, and stage of caregiving–though a mix of experiences can be helpful too). Contact your local Alzheimer’s Association or Area Agency on Aging for support group listings.
- Get a copy of EasyLiving’s new “Caregiver’s Guide to Dementia Care” eBook (free!), with specific tips and strategies on managing behaviors and caregiver resources.
- Still confused about the terminology and signs of Alzheimer’s versus dementia, Sundowners Syndrome and normal memory loss? Grab our Dementia Fact Sheet.
- There is a lot of great information available online, but be sure to talk with your doctor about any medication or alternative treatments you are considering.
- Talk with family members and friends about how they can support you. Even if you do not feel comfortable leaving your loved one in the care of others, they can assist with tasks and errands.
- Set up an Aging Wisely caregiver consultation. During this consultation, we find out about your situation and offer specific expert tips and resources to address your top concerns. You might also benefit from a geriatric care management assessment if you are struggling with figuring out what to do next. A geriatric care assessment provides specific care recommendations, budget projections and resources to assist with care and helps you to plan for future issues and considerations.
- If you bring in outside care assistance, make sure the professional home caregivers are trained in Alzheimer’s specialty care. Ask what in-house training the home care agency provides and how they oversee care and assist their caregivers to manage challenging behaviors and provide specialty care to your loved one. Qualified, professional caregivers can help ease your caregiver stress and provide respite for you.