If you are an unpaid caregiver doing difficult work to keep your loved one healthy and safe, you probably feel overwhelmed and perhaps even isolated. You are not alone. There are more than 44 million people in the U.S. caring full-time for an elder friend or family member, and nearly half (48 percent) provide help to someone who has Alzheimer’s disease or related dementia.
This is hard work, frustrating and stressful, especially if you don’t know what to expect as dementia progresses through stages and symptoms worsen. Early signs of dementia include memory problems, mood swings, poor judgement, difficulty speaking, and disorientation (relative to time and place). In later stages, your loved one will forget family members altogether, lose the ability to enjoy activities that were once beloved, and become incontinent and unable to stay clean.
Witnessing this can be troubling. Emotions run high. Stress runs high. But symptoms like forgetfulness can be managed, slowing the decline. Medications help, and there are things that you can do to maximize quality of life for you both.
Remember to first talk to a doctor about distressing symptoms. There may be specific medical reasons that someone is having particular troubles, like a reaction to medication, and it’s good to eliminate those before attempting to cope with them yourself.
Hands-on care becomes inevitable as your loved one’s dementia progresses. People with dementia usually need help with “Instrumental Activities of Daily Living,” or IADLs. These are activities we perform day to day that add to our quality of life, and are less basic to daily life than ADLs, or “Activities of daily living,” which are tasks performed to take care of ourselves. These basic acts of living become too difficult for someone with dementia. (IADLs and ADLs are listed below.)
Use the following positive approach techniques to help your loved one better understand what is happening, and reduce anxiety (particularly in the late stages of dementia):
– Approach from the front, to be seen coming.
– Walk slowly to allow it to sink in that you’re approaching.
– Stand to the side to be supportive and make your interaction non-confrontational.
– Use your loved one’s name, as people with dementia often remember their first names even as they forget so much else.
– Crouch if the person is sitting, to seem less threatening.
– Offer a hand, to see whether the person is welcoming to touch.
It may help for caregivers to put their hands under the hands of their loved ones when guiding them in a task such as using a fork, brushing hair, or tying shoes. Someone with dementia may only need a reminder of how to do something, and then can take over. Let them do as much as they can on their own, but hand-under-hand provides a helpful nudge.
The things that a person with dementia can do will change as the disease moves into later stages. It’s useful to take notes on the abilities of your loved one, recording how they change over time. Consider rating (on a scale, like 1 through 10) your loved one’s ability to perform Activities of Daily Living and Instrumental Activities of Daily Living. At doctor’s appointments, this info is incredibly useful for an expert to understand the progression of the disease.
Activities of Daily Living (ADLs)
– Toilet use
– Control (continence) of urine and bowels
– Dressing and grooming
– Moving about
Instrumental Activities of Daily Living (IADLs)
– Managing money
– Managing medications
– Using appliances
– Extracurriculars (like a hobby or leisure activities)
You want to work with, rather than against, someone you’re looking after, and little things can be the difference between cooperation and confrontation. You want your loved one to keep their dignity and autonomy, and you want to ease anxiety.
– Keep instructions short, simple, and concrete. Use visual and tactile (touch) cues.
– Offer simple choices rather than asking yes or no questions.
– Ask your loved one for help.
– Ask your loved one to try.
– Break the task down into simple steps.
– If an activity isn’t going well, back off and reassess, then try again.
Dementia symptoms include so much more than forgetfulness. Memory loss is just one component, as problems with communication and emotional and behavioral issues also need managing. Caregivers who don’t know the full range of what to expect can be taken by surprise, especially after symptoms start with expected memory loss. Follow these links to learn more about some of the most common symptoms and problems of dementia, with caregivers tips on dealing with these issues.
Sundowning & Disorientation
Toilet Use & Incontinence
Driving Challenges and Laws
There is much more to being a caregiver than keeping someone with dementia safe and healthy. There are financial and legal issues to manage, and planning for future stages of the disease. Many people simply aren’t equipped to handle the needs of a person with late-stage dementia, so short- and long-term care and living options should be considered, from adult day care to assisted living and memory care.
Caregivers also need to manage their own stress. This is something that’s easy to forget or ignore, but caregiver stress can be expressed in subtle, unintentional ways that your loved one may pick up on, and this can lead to aggravation. Managing your own mental and physical health makes caregiving easier. Click here to learn about care for caregivers, such as dealing with stress and finding support.