Today marks World Alzheimer’s Day, annually uniting people worldwide to raise awareness and challenge the stigma that persists around Alzheimer’s disease and all types of dementia – many still wrongly believe that dementia is a normal part of ageing, according to the World Alzheimer Report 2019. As for the unsung heroes in this picture? The caregivers who take on the burden of creating a safe living space and helping their loved ones with everyday tasks, inevitably experiencing stress in the process.
It’s the early days of caregiving that are arguably most overwhelming, which is why we tapped not one, but two experts from Cleveland Clinic Lou Ruvo Center for Brain Health for their insights. Dr Lucille Carriere (LC) is Clinical Health Psychologist, while Dr Jennifer Pauldurai (JP) is a Behavioural Neurology Fellow. Collectively, they address the key aspects of Alzheimer’s disease – behavioural symptoms, communication challenges, maintaining adequate nutrition, the importance of establishing a routine, and more. Above all, their advice is a reminder that you, as a caregiver, are doing the best you can.
Understand what your role entails upfront.
LC: “In comparison to non-dementia caregivers, dementia caregivers often provide more daily hours of care and higher levels of care (assist with the likes of dressing and feeding), which may increase their risk of experiencing mood and physical health symptoms. Additionally, the roles and tasks of caregiving gradually become more intensive and time-consuming as the disease slowly progresses, thus heightening feelings of social isolation.
Alzheimer’s disease affects not only a loved one’s cognitive functioning, but also their sense of self, personality, and behaviour. In addition to providing daily care, caregivers also experience loss and grief over the loved one they once knew and cherished. They may also have to learn new skills to manage behavioural symptoms such as agitation and hallucinations in their loved ones.”
A healthy lifestyle can slow the progression of symptoms.
JP: “Staying physically active and mentally engaged is very important to maintaining quality of life and daily function. Consider taking your loved one on a daily walk in the park or regularly participating in hobbies, such as yoga or craft-making classes. There is also evidence that optimising our lifestyle, such as our diet and sleeping patterns, can help slow the progression of cognitive decline. Consume a diet rich in varied fruits and vegetables, and low in processed sugars and red meat. A regular routine for daytime activities can promote rest at night.”
Establishing a routine is key for you and your loved one.
LC: “Daily and predictable routines become an important tool to help individuals with Alzheimer’s feel safe, supported, and engaged since the environment around them becomes scarier and more unfamiliar as the disease progresses. It’s important to incorporate meaningful and stimulating activities into daily routines, which allow for opportunities to experience positive emotions and interactions.
Activities should ideally be tailored to the individual’s interests, cognitive and physical abilities, and preferred time of day to optimise the benefits. Because the responsibilities of a caregiver are endless while the number of hours in a day are limited, routines help to remove some of the guesswork out of how to organise the day for both their loved one and themselves. And it’s okay if your loved one is having a ‘bad day’ and necessary changes are made to the routine – remember, there is always tomorrow.”
You can help your loved one maintain some of their independence.
LC: “Even a mild decline in cognitive abilities can negatively interfere with the responsibilities of an individual living with early stage Alzheimer’s, but finding creative and practical ways to compensate can help boost their confidence and sense of purpose. Caregivers can help them maximise independence by maintaining daily routines, providing verbal reminders, encouraging use of memory compensatory skills such as note-taking, or reducing clutter at home. Patients may be more open to trying new compensatory strategies if they’re tailored to their preferences and abilities, so discussing this directly may be helpful in the early stages.”
Patience is key when it comes to communication challenges.
JP: “Alzheimer’s disease causes changes to the brain’s ability to store and retrieve information (memory) and to communicate (language). Over time, you may find that your loved one has difficulties in finding the right word or name to say. Others may have trouble following a complex conversation or understanding how a familiar object is used. Use different methods of communication, like whiteboards or scheduling notes on the phone. Offer to work on activities together to help reinforce ideas. People with memory trouble generally remember feelings better than fact. Communicating with kindness and patience is always more important than getting everything right.”
Be mindful when responding to behavioural symptoms.
LC: “It’s important to first understand the potential causes of behavioural symptoms like agitation or aggression, such as physical (illness, pain, discomfort) or environmental contributors (too much or too little stimulation). Such individuals may have trouble communicating their physical or emotional distress, which may manifest in disruptive behaviours. Discussing concerns with your loved one’s medical team may be helpful in ruling out medical reasons.
For caregivers, remaining patient, calm, and reassuring in reaction to behavioural symptoms is important. The content of your communication may be less important (or understood) than how you communicate. Being mindful of your non-verbal communication style (posture, tone of voice, touch) can be helpful in de-escalating stressful situations. Additionally, it may be helpful for caregivers to engage their loved one in a relaxing and enjoyable activity, or physical activity (going for a walk) to reduce agitation and depressive symptoms.”
Putting your own life on hold isn’t necessary.
LC: “Incorporating regular self-care into a caregiver’s daily routine is beneficial for their emotional and physical health. Support groups and mental health counselling may provide avenues if you’re seeking additional emotional support and problem-solving skills. Caregiver skills programmes have also been developed specifically for caregivers to provide dementia education, behavioural symptom management, and caregiver wellness strategies. Opportunities for respite, or short periods of relief from caregiving responsibilities, can also be beneficial. This can range from asking a friend or family member to sit with your loved one while you run a quick errand to utilising an adult day centre a few days a week.”
Adequate nutrition can improve their quality of life.
JP: “Ideal nutrition intake should be three well-balanced meals that include a variety of fruits, vegetables, and whole grains. Berries and nuts, such as walnuts, provide healthy antioxidants. Whole-grain foods and plant-based meals that are low in processing provide healthy energy to the brain without more toxins. In contrast, the likes of sugar and processed foods introduce chemicals that our body has to metabolise and eliminate. The MIND diet and the Mediterranean Diet are two great plans for incorporating healthy nutrients, but be sure that they’re accompanied by lots of water, especially in the heat of summer. Dehydration and poor food intake can worsen confusion and brain fog.”
Be alert for a sudden and persistent change in activity.
JP: “There may be fluctuations in a patient’s cognition and behaviour, so some days will be better than others. Look out for excess confusion, sleepiness, or decreased responsiveness that persists, which may indicate that their condition is worsening. Falls, head injuries, new abnormal movements, and changes in balance should also get medical attention. Increased (or decreased) urination, coughing, diarrhea or constipation, change in appetite, or shortness of breath may indicate a new illness or infection. Remember, your loved one may not be able to communicate discomfort or might not remember an injury, so be observant and check for signs of something wrong (bruising or cuts, fever, unusual odours). Trust your instincts and seek help if something feels off.”
Lastly, never doubt or underestimate yourself.
LC: “The role of a dementia caregiver is multifaceted, dynamic, and ever-changing. Therefore, it’s not uncommon for caregivers to doubt or underestimate their personal strength and resiliency at any time point along the caregiving journey. With the aid of a care team – consisting of both personal and professional support – caregivers can feel more supported, equipped, and confident in their role.”