There is little doubt that caregiving for someone with dementia can be demanding and challenging, and that knowing how best to care for both the patient and yourself can be hard to figure out.
Here are some tips to help you navigate this difficult time and be the best caregiver you can be for your loved one.
According to the Dementia Society of America, dementia describes a collection of symptoms that can be caused by a number of disorders that damage the brain.
Symptoms of dementia may include:
- Inability to solve problems
- Personality changes
- Behavioral problems (agitation, delusions and hallucinations)
- Memory loss
- Significant mood shift
- Increased falls
- Disturbed gait
“Examining the multiple factors, including environmental ones like a person’s home or neighborhood, is necessary to inform fall-risk screening, caregiver education and support, and prevention strategies for this high-risk population of older adults,” said corresponding author Safiyyah Okoye, who was at Johns Hopkins University School of Nursing in Baltimore when the study was conducted.
Fortunately, the diseases that cause dementia usually progress slowly, which gives you time to adapt your loved ones’ home and lifestyle so they are as safe as possible. Still, each stage of the disease will bring with it unique challenges and concerns.
Early-stage caregiving tips
The Alzheimer’s Association recommends that during the early stage of the disease, you focus on the following:
- Have discussions with the person affected by dementia about the future. These conversations should include legal, financial and long-term care planning. It will be helpful to understand their desires and have everything in writing early in the disease process.
- Evaluate any safety concerns regarding the patient and their environment. Make a safety checklist for any patient with dementia.
- Avoid stressful situations or tasks that cause the patient frustration.
- Maximize their independence, and help with cues and reminders to help their memory.
- Understand that the diagnosis can cause grief for both you and the patient. Be open to treatment for depression for the patient.
- Develop a support system; this may include a support group for both the patient and caregiver.
- Maintain a healthy lifestyle, including regular exercise and nutritious meals.
- Gather information about the disease, the disease process, extended care options and medical providers.
Middle-stage caregiving tips
The Alzheimer’s Association has the following tips for the middle stage of the disease.
Be prepared to assist with toileting and grooming. This care may feel uncomfortable initially, but patience and sensitivity will go a long way toward making you both comfortable.
Communication may become increasingly challenging; patients may need help articulating their thoughts and completing basic tasks. Improve communication by speaking slowly and using a gentle tone.
Driving is typically no longer safe at this stage. Involving the patient in the decision to stop driving may be helpful.
Use safety measures to prevent wandering. Some include:
- Install warning bells to signal if a door is opened
- Put down pressure-sensitive mats, to alert you if a person has moved
- Store items such as coats, hats, keys and wallets out of sight
- Use night lights
- Keep an updated photo of the person handy in case they do wander
- Ask neighbors to alert you if they see the individual wandering around
Late-stage caregiving tips
At this point, most patients require care that exceeds what can be given at home. They often need complete assistance with activities of daily living. At this time, it is about maintaining an individual’s dignity and preventing other illnesses.
The Alzheimer’s Association suggests that your loved one might find it pleasurable to listen to music, look at photographs or have books read to them. Brushing their hair or rubbing lotion into their skin may also provide comfort.
They will require assistance to ensure they are drinking and eating enough.
Keep their skin clean and dry. Support any bony areas with a cushion, to prevent skin breakdown, if the person can no longer move around independently.
Patients with advanced dementia can become aggressive and violent. If this happens, keep your distance until they have calmed down. If they are a danger to you, themselves or others, you may have to call 911.
The U.S. National Institute on Aging suggests considering that there may be a physical cause for the agitation and aggression. Pain, lack of sleep, constipation and medication interactions can worsen these behaviors. If there is a change in the level of agitation or aggression, it warrants a medical visit. The patient’s doctor may prescribe medications that can ease agitation or aggression.
Taking care of yourself during this trying time is vital.
UCSF Health recommends the following to help avoid caregiver burnout:
- Delegate tasks to friends and family when possible
- Eat well and drink water
- Exercise at least three times a week, or take a short daily walk
- Schedule pleasurable, meaningful activities several times a week
- Join a support group
Watch for signs of stress or burnout, including impatience and difficulty with sleep, concentration or memory. Pay attention to mood changes, or a loss of interest in usual activities. If you feel any of these for more than a week or two, call your primary care provider.
There are also plenty of resources for caregivers of patients with dementia, including:
- Family Caregiver Alliance: Offers general information, including details about support groups
- Alzheimers.gov: Lists federal government resources
- Dementia Society of America: Offers information on caregiver workshops, seminars
- National Institute on Aging: Gives guidance on long-term care
- National Institute on Aging: Offers legal and financial planning information for people with dementia
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