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Caregiver’s Guide to Understanding Dementia

Article by CSI

Dementia is a progressive disease and affects each person in a different way. The signs and symptoms linked to dementia can be understood in three stages.

Early-stage dementia: In the first stage of dementia there is a slow disease progress, also known as very mild cognitive decline. The symptoms are often overlooked because the onset is gradual. However, in this stage, caregivers may start to notice that the seniors start finding it harder to recall information, but clear symptoms of dementia are still not obvious.

Middle-stage dementia: The middle stage of dementia is typically the longest and can last for many years. As the disease progresses, the signs and symptoms become more restricting, and the person with dementia will require more direct care. Caregivers are advised to create a daily care plan and adjust the existing schedules as needed to provide the necessary level of care.

Late-stage dementia: The late stage of dementia is the stage when the patient becomes almost totally physically and emotionally dependent. This stage is also characterized by high levels of inactivity. Memory disorders become more serious, and the physical, emotional and behavioural symptoms become more obvious.

Age-related neurocognitive disorders such as dementia can lead to the loss of individual autonomy. Its incidence and prevalence increase exponentially with age, where more than 90% of dementias appear after the age of 65. Since dementia may lead to a progressive loss of independence, the person may become more reliant of the care of other people. Dementia can be expressed as a decline in everyday activities, memory loss, emotional fluctuation, loss of control over behaviours, changes in interpersonal communication and many more. Studies suggest that “despite social functional decline being characteristic of dementia, that there is a possibility that facilitating increased social contact in people with dementia may improve disease outcomes”. All direct care providers need to have the necessary soft skills and knowledge to work with people with dementia.

As mentioned before, in early stages, a person with dementia can participate in normal conversations but will simply forget a word or might use the wrong words. “As Alzheimer’s disease and other related dementias destroy brain cells, a significant symptom, known as “aphasia,” is losing the ability to speak and to understand speech. Aphasia worsens as the disease progresses. It becomes harder to remember the right words and process what others are saying. Difficulty while speaking is one of the first noticeable symptoms in people with dementia, particularly those with Fronto Temporal dementia.” Therefore, trying to communicate with a person with dementia can be proved to be quite difficult while the disease is progressing.

Tips and strategies for maintaining communication with people with dementia:

  • Stand near the person.
  • Refer to the person by name.
  • Maintain good eye contact.
  • Always try to get person’s attention and awareness.
  • Create quiet spaces and calm environments.
  • Minimize distractions.
  • Use basic language.
  • Keep the person comfortable.
  • Use positive body language and gestures.
  • Give the person time to find the right words to express their selves.
  • Read body language and emotions.
  • Avoid using open-ended questions.
  • Learn how to cope with decreasing verbal skills.
  • Identify and validate the feelings, expressed verbally or nonverbally, of the person.

References:

Dementia. Retrieved from: https://www.who.int/news-room/fact-sheets/detail/dementia

Todaysgeriatricmedicine.com. Retrieved from: https://www.todaysgeriatricmedicine.com/archive/MA17p16.shtml

Leisurecare.com. Retrieved from: https://www.leisurecare.com/resources/7-stages-dementia

Web.archive.org. Retrieved from: http://web.archive.org/web/20210124214938/https://www.seniorlifestyle.com/resources/blog/detecting-alzheimers-symptoms-stages

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A FAMILY CAREGIVER

Family caregivers (also known as “carers”) according to the definition are “relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services.” As life expectancies increase, medical treatments advance, and increasing numbers of people live with chronic illness and disabilities, more and more of us find ourselves caring for a loved one at home. Whether you’re taking care of an aging parent, a handicapped spouse, or looking after a child with a physical or mental illness, providing care for a family member in need is an act of kindness, love, and loyalty. Day after day, you gift your loved one your care and attention, improving their quality of life, even if they’re unable to express their gratitude. Regardless of your particular circumstances, being a family caregiver is a challenging role and likely one that you haven’t been trained to undertake. However, you don’t have to be a nursing expert, a superhero, or a saint in order to be a good family caregiver. With the right help and support, you can provide loving, effective care without having to sacrifice yourself in the process.

SOME TIPS FOR A FAMILY CAREGIVING

Accept your feelings

Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. It’s important to acknowledge and accept what you’re feeling, both good and bad. Having these feelings doesn’t mean that you don’t love your family member, they simply mean you’re human. Even when you understand why you’re feeling the way you do, it can still be upsetting. In order to deal with your feelings, it’s important to talk about them, don’t keep your emotions but find at least one person you trust to confide in, someone who’ll listen to you without interruption or judgment.

Find caregiver support

Even if you’re the primary family caregiver, you can’t do everything on your own. You’ll need help from friends, siblings, and other family members, as well as from health professionals. If you don’t get the support you need, you’ll quickly burn out which will compromise your ability to provide care, but before you can ask for help, you need to have a clear understanding of your family member’s needs.

Really connect with your loved one

When handled in the right way, caring for a loved one can bring meaning and pleasure to both you, the caregiver, and to the person you’re caring for. Staying calm and relaxed and taking the time each day to really connect with the person you’re caring for can release hormones that boost your mood, reduce stress, and trigger biological changes that improve your physical health. Avoid all distractions such as the TV, cell phone, and computer, make eye contact, hold the person’s hand or stroke their cheek, and talk in a calm, reassuring tone of voice.

Attend to your own needs

If you’re distracted, burned out, or otherwise overwhelmed by the daily grind of caregiving, you’ll likely find it difficult to connect with the person you’re caring for. That’s why it’s vital that you don’t forget about your own needs while you’re looking after your loved one.

Provide long-distance care

Many people take on the role of designated caregiver for a family member while living more than an hour’s travel away. Trying to manage a loved one’s care from a distance can add to feelings of guilt and anxiety and present many other obstacles. But there are steps you can take to prepare for caregiving emergencies and ease the burden of responsibility such as set up alarm system, arrange telephone check-ins, manage doctor and medical appointments and schedule regular communication.

If you overcome some of these challenges, you will make caregiving more rewarding for both you and the person you are caring for.