Dementia is a progressive, debilitating condition of the mind and body. It is present in Alzheimer’s and other similar diseases. Dementia affects memory, learning, attention and problem solving abilities. It is important for caregivers to have support and information in meeting these needs.
As much as two-thirds of people with this condition are cared for in the community and at their own homes by their loved ones. Spouses are the most common caregivers and other relatives give their time and energy in meeting the growing needs of dementia sufferers as they deteriorate over time.
What are the steps to take in caring for a patient with Alzheimer’s disease effectively?
1. Plan early.
If your loved one is at the earliest stages of mental decline, then you must expect them to deteriorate. You should involve them in the decision-making process about their plan of care up until the end. There will come a time when they will not be lucid enough to communicate with, and early planning to get things in proper order is the wise thing to do.
Things to consider in the long-term include:
- Caregiver support (e.g. own family, geriatric care managers)
- Medical care (e.g. intensive care, end-of-life care)
- Appropriate choice of living conditions (own home,
nursing home, assisted living facility)
- Financial aspects (who will shoulder health care
- Legal matters (if the patient becomes incapacitated, health
care decisions are made under a prepared legal document or process, such as guardianship/conservatorship, living will, power of attorney, etc.)
Taking care of money matters early and anticipating the patient’s health needs will make things easier for both the patient and those who care for them.
2. Stick to a routine.
Memory problems plague Alzheimer’s patients. The most ordinary and mundane tasks of everyday living will be difficult for them to do. A routine makes it less daunting for them to be aware of their surroundings and to function as independently as possible. Some of the recommendations in making a routine for patients with dementia are:
- Schedule activities at the same time every day. This maintains the person’s sense of structure and orientation. For example, a specific schedule should be set for waking up, dressing, grooming, eating meals, receiving guests, recreation and bedtime.
- Associate different tasks to particular cues. The person may not be always aware that it is time to wake up when the alarm sounds at 7 a.m. However, he or she may remember that it is time to get up from bed when you open the curtains to let sunlight in.
- Try to make the patient perform activities of daily living as much as possible. For instance, the person may have lost the ability to brush her teeth independently. However, she can still fill the plastic bottle with water, so let her do it. Balance these decisions with safety considerations.
- Keep things tidy and place objects in familiar places. A person with dementia can get confused or angry when he is unable to find her comb or family picture frame on the same exact spot. Keep changes to the room to a minimum and return things in their proper places.
- Make sure you integrate some form of socialization and recreational activities into the routine. What does the person enjoy doing? Is it walking, singing, or painting? Tailor these activities to their own hobbies and interests. Include group activities for those with Alzheimer’s.
3. Communicate simply and clearly.
Patients with dementia eventually lose their communications skills. You will notice them stuttering, speaking garbled or meaningless words, and using hand gestures instead of talking. In their confusion and frustration, you may encounter frequent outbursts by the patient. To communicate better, you should:
- Speak to the client clearly with terms that are easy to understand and familiar to the patient.
- Ask questions and give instructions only one at a time. Give ample time for them to respond.
- Use body language to convey your message. Encourage the person to use gestures and other signs to help them remember certain things.
- Watch out for your own facial expressions and body language. If you become frustrated or angry, do not show this to the person. It will only agitate him or her further.
3. Meet their everyday needs.
Progressive cognitive decline renders dementia patients helpless. They forget names of common objects and lose such common skills like feeding or taking a bath.
Assisting them with these tasks on a daily basis is the bulk of your responsibilities. Here are some general tips:
- Ensure good nutrition. A diet plan must involve the person if possible. Help guide them during feeding times. Be patient when the person resists or spits out food. Try to simplify meals.
- Maintain personal hygiene. Help them wash or bath but provide privacy as much as possible. Ensure safety in bathrooms and other areas that can cause falls. Install handrails and proper lighting. Search for cues (e.g. fidgeting) of their urge to defecate or urinate.
- Assist with grooming and dressing. Choose comfortable clothes and do not argue with the person if he or she refuses to change clothes.
- Promote good sleeping habits. Limit caffeine intake. Provide a dim light at night. Place clocks prominently so that he or she is aware of the time.
- Distract the person when he or she is hallucinating. Avoid arguing over their hallucinations.
- Prevent wandering by keeping your home secure, placing stop signs and warning labels. Install fencing and alarm systems if possible. A regular companion is recommended for those who wander frequently.
5. Consider long-term care, hospice, or end-of-life care.
It may come to a point where the person you are caring for has deteriorated enough to warrant a transfer to a facility from the comforts of their own home. These facilities can provide round-the-clock care for the person. Evaluate nursing homes and assisted living facilities for their reputation, staff turnover, and their practices in how they handle patients with dementia.
It is particularly difficult when the person has advanced dementia. At this stage, they have likely developed other fatal diseases such as end-stage renal disease, heart failure or cancer. End-of-life care should be discussed with physicians, who can certify patients to enter hospice where they receive palliative care.
Just 11 percent of Americans with dementia died in hospice care in 2010. The majority do not receive palliative care during the late stages of their life. If you care enough for the person, then you should arrange for end-of-life care when the time comes. They deserve to endure less suffering and to die with dignity.
6. Take care of yourself.
It is challenging and even traumatic to care for loved ones with Alzheimer’s disease and dementia. The stress can increase the likelihood of your own cognitive decline.
You always want to give your best effort that you can for your loved one. However, you should take care of yourself too. Do not neglect your own health and try to find some time for relaxation. Your loved one needs you to become as strong as possible, mentally and physically, to assist them with their needs.
If you feel overwhelmed, there is plenty of support available for caregivers. Do not hesitate to reach out and seek help.