Caring for someone with Alzheimer’s Disease

Your loved one has been diagnosed with Alzheimer’s Disease. You decide to be the primary caregiver so they can remain at home and benefit from a familiar environment and continued independence. As the disease progresses, you may be faced with more challenges which take a significant toll on your physical and mental well-being.

Caregiver stress is serious, and if ignored can lead to illness and, in some cases, hospitalization.

“The most important thing a caregiver can do is take care of him or herself,” says Dr. Tanya Pinto, Geriatric Psychiatrist with the GAIN Clinic at The Scarborough Hospital. “This means identifying supports and asking for help, taking personal time and managing their own health.”

The Geriatric Assessment and Intervention Network (GAIN) Clinic at TSH provides a holistic approach to care, including comprehensive assessments,providing education for caregivers and connecting them with appropriate community resources.

“Information is power,” says Debbie Driver, Nurse Practitioner with the GAIN Clinic at TSH. “Knowing what resources are available within your community and understanding the disease can reduce the stress in caring for your loved one.”

Debbie adds that several agencies will provide services such as home assessments to identify safety modifications, bathing and grooming care and education and resources to help a caregiver understand the disease and prepare for the future.

Dr. Pinto and Debbie also identify some strategies to help caregivers remain at an optimal level of well-being.

Learn about Alzheimer’s Disease. A person with Alzheimer’s Disease can present challenging behaviour as they experience memory loss. The behaviours can be frustrating, but understanding them will enable you to better cope with the situation. Speak to staff at the GAIN Clinic, consult your family doctor, read books and online information, and contact specialized agencies such as your local Alzheimer Society chapter.

Take a break. Sometimes a short walk around the block is enough to help you maintain your mental and physical health. If you need a longer break, such as a vacation, consider respite care. Ontarians who receive CCAC service are eligible for up to 90 days respite care annually. This could also serve as an initial introduction to a long-term care facility.

Ensure you get enough sleep. People with Alzheimer’s Disease often wake during the night, and their activity can disrupt your sleep. Ensure you both practice good sleep hygiene such as limiting daytime naps, joining a day program, and engaging in quiet activities before bedtime. Continued restlessness throughout the night, could indicate a physical issue such as sleep apnea, restless leg syndrome or a bladder infection. Visit your family doctor to rule out or address any physical conditions.

Have the challenging conversations early on. Once you have received the diagnosis, think about and discuss future plans before the disease progresses. For example, would your loved one want CPR or a feeding tube if needed? How do they feel about a long-term care facility? What does quality of life mean to them? These conversations are difficult, but discussing wishes ahead of time will reduce future stress.

Don’t take things personally. Emotional outbursts may arise from time to time, which may be directed at you since you are a familiar person. These outbursts are the result of frustration, and are not necessarily meant to hurt you. As difficult as it may be, try to remain objective during these outbursts.

Don’t be afraid to ask for help. You are not alone. Identify your support system, and don’t be afraid to ask for help. Family, friends, neighbours, a support group and healthcare professionals are available to help you through this difficult time and ensure you maintain your physical and mental health.

Remember that Alzheimer’s Disease is an evolving process, and every situation is unique. As a caregiver, you will be faced with constant change, so try your best to remain flexible. Experiment with different strategies and techniques to determine what works within your lifestyle.