Help! My parent has Alzheimer’s

A slow and progressive disease of the brain, Alzheimer’s affects memory, thinking and behaviour, ultimately interfering with a patient’s ability to perform daily tasks. It is known as the most common form of dementia. “While age increases one’s risk, Alzheimer’s disease is NOT a normal part of ageing,” says Kim Hellberg, KwaZulu Natal’s Regional Manager at the Association for Dementia and Alzheimer’s South Africa NPC (ADASA). That’s why it’s so important to help one’s aging parents to adopt a healthy lifestyle, thereby lowering their Alzheimer’s risk. 

Reducing the risk of Alzheimer’s 

While there is no magic formula to prevent Alzheimer’s, one can reduce the risk of developing the disease. Risk reduction strategies are usually centred around maintaining a healthy lifestyle through diet, exercise and engaging in activities that support brain health.

Hellberg points the following changes that can help reduce the risk of all forms of dementia:

1. Regular physical exercise
2. A healthy diet
3. Limiting alcohol intake
4. Quitting smoking
5. Keeping the mind stimulated and active
6. Engaging in social interactions
7. Treating conditions such as hypertension and diabetes
8. Treating hearing loss

Managing Alzheimer’s

Although Alzheimer’s cannot be cured, it can be managed with a treatment approach that involves a combination of medications, lifestyle changes, and supportive care. “These approaches aim to manage symptoms – such as restlessness or insomnia – and improve the quality of life for patients,” Hellberg says.

One of the most challenging aspects of the disease is the way in which it progresses – meaning you can never be certain of how your parent will behave at different points in time. “The disease progresses through stages, and behaviours and symptoms vary accordingly,” Hellberg explains.

“Each individual experiences Alzheimer’s differently, with potential behaviour and personality changes causing the person to act differently from their ‘old self’. These changes can be upsetting and frustrating for both the person with Alzheimer’s and their family.”

While it cannot diminish one’s pain at watching the disease progress, knowing that a patient’s behaviour is governed by changes in the brain which affect memory, judgment, orientation and mood, can help one gain greater understanding. “Often, there is a reason for certain behaviours, as the person may be unable to communicate their needs or feelings verbally,” says Hellberg.

She points out other symptoms which may include:

• short-term memory problems
• diminished ability to plan activities
• challenges with language and communication
• confusion or disorientation with time and place
• poor or decreased judgement
• difficulty performing familiar tasks
• withdrawal from work or social activities
• misplacing objects
• mood swings
• visual-spatial changes

The emotional impact of Alzheimer’s 

While a parent with Alzheimer’s is still physically present, the personality changes they may exhibit can leave one feeling a sense of grief and loss. “Children may experience a loss of hopes and dreams, as they are unable to do all the things they had hoped to with their parent,” Hellberg says.

Some of the most difficult aspects of the disease include a necessary role reversal, where the child essentially takes on the parental role. “As the disease progresses, the parent may also not remember their child or may confuse them with someone else, which can be exceptionally difficult for the family,” Hellberg adds.

“Feelings of embarrassment, frustration, denial, fear and even anger are also common as children learn to cope with this cruel disease.”

You’ll also find that all your energy is focused on helping your parent to manage the disease – and on ensuring that you’re coping as well as possible. This can inevitably affect your spouse or children, as you may have little capacity to give your all to these relationships as you navigate your parent’s changing reality. That’s why having the right support is so important.

Coping strategies

So just how can you find support and handle the inevitable upheaval dealing with your parent’s Alzheimer’s will bring? Hellberg shares the following coping strategies:

• Educate yourself about Alzheimer’s: Understanding the progression of Alzheimer’s and what to expect can help you prepare and respond effectively. Knowledge about the disease can reduce frustration and provide insights into your parent’s behaviour.
• Avoid reasoning or arguing: It will only end up upsetting both of you.
• Be patient: Your parent may ask the same questions repeatedly or tell the same stories. Recognise that this is their way of communicating, and showing frustration or impatience can erode their self-confidence and reduce their engagement with you.
• Enter their world and reality: Understand that what your parent is experiencing is very real to them. Telling them “I have already told you that” or “that is not real” is not helpful.
• Focus on abilities: Concentrate on what your parent can do, not on what they can’t. Keeping them active and involved helps them find meaning and enjoyment in everyday tasks.
• Don’t challenge their memory: Don’t ask your parent to recall memories that you know they will struggle with. Alzheimer’s disease initially affects short-term memories.
• Take care of yourself: Caregivers are at risk for depression and burnout. Ensure you take care of your own wellbeing.
• Find support: Seek counselling, join a support group, talk to a trusted friend, and share what would be helpful. People often want to help but may not know how.
• Remember the person beyond the disease: The disease does not define your loved one. Cherish the wisdom, life experiences, and many fond times shared together. Relish the memories that you have.
• Reach out for support: Contact your regional ADASA office for support services, including individual and family consultations, counselling, support groups, dementia training, and community outreach and awareness.

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