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.

Memory screening can help with early diagnosis of dementia

Early detection of Alzheimer’s Disease and other dementias can lead to appropriate interventions, such as medical treatments, social services, and advanced care planning. The key to an early diagnosis is the use of memory screening.

“Memory screening is about the storage and retrieval of information,” explains Jacqui Robinson, Occupational Therapist, GAIN (Geriatric Assessment and Intervention Network) Clinic at The Scarborough Hospital. “We start with three or five words, and ask the patient to remember those words while doing other tasks. As an OT, I cannot diagnose dementia, but I can probe to determine specific memory problems. Once I have identified thinking changes, I collaborate with the rest of the team so that we can provide diagnoses and recommendations.

“We also look for patients who are repeating the same story or question over and over again, which can be a sign of dementia.”

June 14 is National Memory Screening Day, and the interprofessional team of healthcare providers at TSH’s GAIN Clinic offer the following early signs of changes in thinking:

• Changes in memory – forgetting how to do something you’ve done all of your life, like following a recipe or a simple repair job around the house.
• Changes in language – increasing word-finding problems or difficulty reading the newspaper or books.
• Changes in judgement, such as wearing clothing that’s not appropriate for the weather (i.e., going out in a snow storm with only a sweater).
• Misplacing things in strange places (car keys in the fridge, for example).
• Changes in personality, such as acting out of character, withdrawing from people or social situations.
• Changes in driving proficiency – increases in “close calls” and/or fender benders, stopping at a green light, etc.

Ten signs of Alzheimer’s Disease

By age 85, one in three seniors have symptoms of dementia; by age 65, mild cognitive impairment starts appearing in two per cent of people, and that number doubles every five years.

Alzheimer’s Disease, the most common form of dementia, is a progressive, degenerative disease of the brain, which causes thinking and memory to become seriously impaired. Tuesday, September 21 is World Alzheimer’s Day, an ideal time to get familiar with the warning signs of the onset of this disease.

“Watch for simple signs of forgetfulness; a little bit more than ‘where did I put my keys?’ or ‘where did I put the phone?’” explains Dr. Joel Maser, a geriatric specialist with the Specialized Geriatric Unit at The Scarborough Hospital. “Sometimes, they might repeat themselves, asking the same question over and over, or they miss dates, forget to turn off lights, tap or stove.”

Sometimes they may be temporarily confused: “Where did I put my car in the parking lot?” That happens to all of us at times, but if it happens a little too frequently, it might be a sign of “mild cognitive impairment” that we see in the elderly, and we start getting concerned, “Is this is the onset of dementia?”

Be vigilant and watch for the signs:

1. Memory loss that affects day-to-day function (i.e., cooking, forgetting to take pills)
2. Difficulty performing familiar tasks (i.e., such as driving, hobbies, etc.)
3. Problems with language (i.e., forgetting words and names)
4. Disorientation of time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood and behaviour
9. Changes in personality
10. Loss of initiative (i.e., feelings of apathy)