In caring for a family member or loved one at home who has dementia, there are special considerations that require a marriage of compassion, order, and clever planning. Dementia is a progressive degenerative disease of the brain affecting memory, thinking, and behavior. Often, as the disease progresses, the patient needs increased and constant care and supervision, making daily care and tasks for family and 24/7 caregivers vital to keep the patient safe at home while caring for their overall well-being and providing for their needs.
This is a detailed guide to how to care for people with dementia living at home thoughtfully and compassionately.
Understanding Dementia and Its Impact
‘Dementia is a syndrome or group of symptoms involving a decline in cognitive function that affects a person’s ability to engage in social or occupational pursuits. The underlying cause may be Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia, or another identified cause, or it may remain undiagnosed. In addition to impairments in memory, patients can experience language, visual-spatial, and perception difficulties, and decline in judgment, orientation, problem-solving, and decision-making abilities. Problems with mood, depression, and behavioral changes that affect social interactions might develop. Symptoms can vary greatly in severity and may affect different areas of functioning.
Key Challenges in Dementia Care:
- Memory Loss: Difficulty remembering recent events or familiar names and places.
- Behavioral Changes: Changes in mood, behavior, and personality.
- Communication Issues: Trouble finding the right words or following conversations.
- Safety Concerns: Increased risk of wandering, falls, and accidents.
- Daily Living Activities: Difficulty with tasks such as dressing, bathing, and meal preparation.
Strategies for Providing 24/7 Support
The main principles of good care would apply to home care of dementia patients: a whole-person approach to deal with both physical and psychological – and emotional – needs. Here is a complete guide to round-the-clock care:
1. Create a Safe and Comfortable Environment
Ensuring a safe home environment is crucial to preventing accidents and promoting comfort.
- Remove Hazards: Eliminate tripping hazards, secure loose rugs, and install grab bars in bathrooms.
- Install Safety Devices: To help prevent wandering and falls, you can use safety locks, door alarms, and motion-sensor lights.
- Comfy Furniture: There should be adequate comfy furniture, and the living area should be well-lit and easy to move around in
2. Establish a Routine
Routine can also bring structure and reduce anxiety for patients. They are more likely to feel secure if their days are somewhat predictable and tasks are performed in the same way each time.
- Daily schedule: Create a daily schedule for meals, activities, and rest, and make it as consistent as possible so that the patient knows what to expect.
- Stripped-down Tasks: chunking – breaking down demands into more manageable tasks if possible; and scaffolding – using external aids such as visuals or explicit instructions where appropriate.
3. Monitor Health and Medical Needs
Regular health monitoring is essential for managing dementia and related health issues.
- Medication Management: Use a pill box or medicine reminder system to take medication regularly and as prescribed, and keep track of refills. Stay in contact with healthcare providers.
- Regular visits to the doctor: Take your relative to the doctor for regular check-ups to monitor the progression of dementia and to manage any other health problems.
4. Enhance Communication
Effective communication is key to providing supportive care and minimizing frustration.
- Simple Language: Use clear, simple language, and speak slowly. Avoid complex instructions or questions.
- Non-Verbal Intuition: Use perceptual signals – body language, facial expressions, and movement – to understand what’s going on.
- Patience and reassurance: remain patient and reassuring. Don’t try to argue or correct the patient, as doing so can cause agitation.
5. Promote Physical and Mental Stimulation
Engaging in activities can help maintain cognitive function and provide emotional satisfaction.
- Cognitive Activities: Develop cognitive activities such as puzzles, memory games, and reading.
- Physical activity: undertake gentle physical activities, such as walking, stretching, or chair exercises that increase fitness and mobility to enhance physical health.
- Socializing: Spend some time with another person, a family member, a friend, or a support group (to ward off isolation and loneliness).
6. Implement Behavioral Management Techniques
Addressing behavioral issues and managing challenging behaviors are integral parts of dementia care.
- Identify Triggers: Look for events that precede difficult behavior, for example, if there are specific times of day when it happens or certain activities.
- Redirection: Ask the patient to do something else (switch to another activity or subject) to break the spell of agitation or frustration.
- Remain Calm: Approach the situation with as much calm and empathy as possible, using quiet, gentle tones and gentle physical touch, if appropriate.
7. Ensure Personal Care and Hygiene
Supporting personal care and hygiene is important for maintaining health and dignity.
- Help with personal hygiene: Assist with bathing, grooming, and dressing, whilst also respecting the patient’s privacy and wishes.
- Adaptive Equipment: Reduce the need for stamina and risk by using adaptive equipment, for example, a bathing grab bar or a shower chair.
8. Encourage Independence Where Possible
Maintaining a sense of independence is important for self-esteem and quality of life.
- Support Autonomy: Permit the patient to perform as many tasks as possible for as long as possible, assisting as needed.
- Adjust Activities: Personalize activities or organize them to support the patient’s ability and match their interests, helping them feel successful and connected.
9. Manage Caregiver Well-being
Taking care of dementia patients can be emotionally and physically draining. Therefore, caretakers need to look after their health as well.
- Respite Care: If your care company doesn’t offer this service, other nearby agencies can be contracted to provide respite care on a short- or long-term basis, or even just a few hours a week, to give caregivers a break and prevent burnout.
- Support networks – have family or friends as a support network. Reach out to other caregiver support groups and share commonalities that can be beneficial in difficult times.
- Self-care: Take good care of yourself by continuing with exercise (if not starting them), rediscovering and developing your hobbies, and making sure you practice your own personalized, tried-and-tested coping strategies regularly or as often as possible.
10. Utilize Technology and Assistive Devices
Technology and assistive devices can enhance safety and ease caregiving tasks.
- Medical Alert Systems: Use a medical alert system or other emergency response systems, which provide instant access to help should emergencies develop.
- Monitoring Devices: Install monitoring devices or cameras (respecting individual privacy) to track the safety and welfare of the patient.
- Assistive Technology: Look at some assistive technologies for helping with dementia, such as memory aids, reminder systems, and automated medication dispensers.
Navigating Legal and Financial Aspects
Caring for a dementia patient involves navigating various legal and financial considerations.
- Legal documents: Make sure that powers of attorney, living wills, or health care proxies are in place and up-to-date.
- Financial Planning: Manage finances by setting up budgets, exploring government benefits, and considering long-term care insurance or other financial resources.
Resources and Support
Several resources are available to support families and caregivers:
- Alzheimer’s Association: Provides information, support, and resources for dementia care.
- National Institute on Aging: This organization offers educational materials and resources related to dementia and caregiving.
- Local Support Groups: You might find it helpful to reach out to local support groups and community services.
Providing 24/7 care to a loved one with dementia in the home means finding a way to do everything possible to maintain a comfortable and safe daily living environment for both the person with the illness and their care partner through simple problem-solving, creative caregiving, and resource-finding; providing warm and attentive hands-on care; and engaging in efforts to manage the illness and mitigate crisis even while navigating sudden shifts in mood and behavior in an attempt to maintain a level of balance and quality of life for the person living with the illness and their family care partner. This entails being resilient – both physically and emotionally – for the long haul, along with understanding the resources available and where to find support to employ in providing the best possible and most effective care.
