Hearing that someone you care about has been diagnosed with dementia is never easy. Still, it will become even more difficult if you do not understand what the diagnosis means for them, you, and the rest of the family. There are lots of misconceptions and myths floating around about dementia, including the assumption that a person with dementia will quickly lose all quality of life. With the right medication, treatment, and care, a person with dementia can enjoy a high quality of life for many years.
If you are considering caring for a family member with dementia in your own home, here are some important considerations to keep in mind.
Dementia is the term applied to a loss of cognitive functioning. According to the World Health Organization, it is a deterioration in memory capacity and thinking, which can lead to behavioral changes and impact a person’s ability to perform everyday activities.
Dementia typically affects older people (although it is not a ‘normal’ part of getting older), and there are approximately 50 million people with dementia in the world.
One of the most common misunderstandings about dementia is that it is a disease when, in reality, it is a symptom. Dementia is caused by another condition or disease and is not contagious. The most common cause of dementia is Alzheimer’s disease accounting for 60–70% of cases. Some other conditions which can cause dementia include:
- Brain tumors
- Head injuries
- Vascular dementia (narrowing of blood vessels)
- Long-term alcoholism
- B12 deficiency
- Thyroid, kidney, or liver disease
In some cases, dementia is a temporary symptom that will improve with medication and therapies, but there is no cure for degenerative dementia. Degenerative dementia will continue to worsen over time, and there are three stages: early/mild, middle/moderate, late/severe. In the final stages of Alzheimer’s dementia, the sufferer may become unresponsive to their environment, vulnerable to infections, and require round-the-clock care.
What can exacerbate the condition?
People with dementia can be cared for at home, but it is important to be aware that their condition may be more difficult to manage when they become agitated. When agitated, they may become uncharacteristically aggressive or potentially violent. The key is to remember that their behavior is directed at you and is not personal. Agitation in dementia sufferers is usually caused when there is a change to their environment or routine. These episodes can also be brought on by a lack of sleep, hunger, thirst, overstimulation, being too warm or too cold, lighting that is too bright or dim, or being unable to communicate.
Preventing severe agitation
You, as their primary caregiver, will come to learn what can trigger agitation or aggression in your family member, so you will be able to avoid those situations and spot the warning signs. You will know what makes them comfortable and engaged and what causes them particular discomfort. When you notice that they are becoming upset, you can take steps to help them be more comfortable. Try to stay on top of their medication, stick to regular mealtimes, and make changes to their environment when necessary.
Sometimes, conversation, interaction, and/or a change of scenery will distract them from their anxiety. For example, you could strike up a conversation about a topic that interests them, take them outside for a walk (where they will benefit from fresh air, sunlight, and exercise), or offer them physical reassurance such as holding their hand or hugging them. It may be that just a few soothing words and a pat on the hand will reassure them enough to avoid an aggressive episode.
The way you communicate with a person who is suffering from dementia is crucial. In the early stages, you might not notice much difference, but gradually their capacity to process information will slow. When this happens, you should speak clearly in a voice that is easy to hear. Too many questions in rapid succession or using complex language is not helpful when they are already finding it difficult to process their thoughts.
Keep sentences short and simple, so they are easier to understand, and be patient when waiting for them to answer. Using slang words or trying to engage with them about recent events might be upsetting to them if they are no longer aware of the time period that they are living in. You may also need to repeat yourself several times.
Regular communication and mental stimulation are crucial for their emotional well-being, but using the brain can also slow the progression of the condition.
Looking after their physical health of Dementia
Dementia can make it more difficult for your loved one to take care of themselves physically, including making sure they take the right medication at the right time and ensuring that they are eating well, getting enough hydration, exercising regularly, and sticking to a regular sleep routine.
In the early stages, this might be a case of encouraging them to follow a healthy lifestyle, but in the late stages, people typically need 24/7 personal care. Should you feel at some point that you are not able to provide the dementia care that your loved one needs, you might want to look into assisted living facilities that specialize in providing dementia and Alzheimer’s sufferers with the best quality of life.
Caring for yourself on Dementia
Dementia is a cruel and destructive condition not just for the person diagnosed but also for those who care about them. When you combine the emotional distress of seeing someone you love suffering from the physical demands of caring for them at home, it is natural to need support. Lots of medical institutions and charities offer support for the families of dementia patients, including respite care, counseling, and opportunities to meet socially with other caregivers in a similar situation. There are also online support forums for caregivers and telephone helplines, which might provide a vent for your worries and frustrations.
Remember to ask for help from family and friends when you need it and try to find time to care for your own physical and mental health. When you are at your best, you can provide the best care for your loved one, but trying to do everything for your loved one without enough sleep, nutrition, or emotional support will only lead to burnout.