Dementia Aware  

You have dementia!

What you need to know about the emotional responses to a diagnosis of dementia

At the first World Health Organization Ministerial Conference on Global Action Against Dementia (2015), Margaret Chan, director Genera of the WHO, opened with this statement:

“I can think of no other disease so deeply dreaded by anyone who wants to age gracefully and with dignity.

"I can think of no other disease that has such a profound effect on loss of function, loss of independence, and the need for care.

"I can think of no other disease that places such a heavy burden on families, communities, and societies.”

Learning that you (or a loved one) has dementia can be devastating. Suddenly, all your hopes, your dreams, and your plans for the future are extinguished. From this moment, everything changes, life will never be the same again, and how you react to the diagnosis and move forward, will be influenced by many factors:

  • Your personality
  • Your health
  • Your biography
  • Your religious/spiritual beliefs
  • Your previous coping methods
  • Your ethnicity
  • Your type of dementia e.g. Alzheimer’s, Frontal lobe
  • Your mental health e.g. anxiety disorder, depression, schizophrenia

People with dementia and their caregivers report that upon hearing the diagnosis, the first reactions are usually one of shock and disbelief.

These feelings may last for hours or even days, but eventually, they give way to feelings of grief and sadness, of fear and of a sense of helplessness; ‘what do I do now?’ (see article #3).

There may also be feelings of:

  • anger
  • despair
  • frustration
  • anxiety
  • hopelessness
  • embarrassment
  • denial

All these reactions are normal responses as you (caregiver/family) try to make sense out of the news. Each day will be different; one day you may feel angry, the next day you may feel sad.

One lady with Alzheimer’s disease said, “it feels as though my brain is being taken away, bit by bit.”

For many, especially in the early stages of dementia, the physical capacity to carry out tasks remain intact, but the memory loss coupled with frustration, grief, or anxiety can reduce the person with dementia’s confidence and make him/her more angrier and/or depressed.

If the person with dementia appears to be having difficulty, it is important to follow up with the doctor for an assessment, and to determine if any treatments may help e.g. medications, referral to geriatric psychiatrist or counsellor.

You may also experience:

  • Sleep disturbance
  • Appetite changes
  • Becoming preoccupied with finding information about your type of dementia
  • Crying at unexpected times
  • Stop seeing friends, participating in social events (withdrawal)
  • Becoming more confused (due to a lowered stress threshold, the brain is less able to cope with sudden changes)
  • Feeling less confident

This is a very difficult time in your life. Living with dementia is an emotional as well as a cognitive experience. You will feel scared, scared of what may happen to you, scared of the unknown.

It is during this time, that you may, out of fear and anxiety about your future, ask a loved one to make a promise that he/she may be unable to keep e.g. promise me you’ll never send me to a nursing home, promise me you’ll help me die.

These requests, whilst perfectly understandable, place a tremendous burden on the caregiver. Your caregiver will do everything possible to keep you safe, cared for and loved; however, circumstances change, and your loved one, through no choice of their own, may be unable to fulfill the promise.

Dementia is like embarking on a journey with no map. It won’t be easy; activities that had once been easy and taken for granted now require careful thought and attention.

The pace of every-day life slows down, and any activity takes longer, often to the point where the person with dementia may find him/herself lost in time itself.

To help reduce frustration, take back control, and start to enjoy life: plan for the future, live in the moment.

To move forward, you should:

  • Slow down
  • Give yourself time to complete a task
  • Do one task at a time
  • Keep active (physically and socially)
  • Maintain a daily routine
  • Try to keep a positive outlook
  • Record your thoughts and feelings: in a journal or a video recording
  • Keep a diary, make lists, record important dates on a calendar
  • Remain hopeful
  • Find an outlet to express your feelings
  • Laugh, when all else fails, laughter is the best medicine

And most important:

  • Communicate (verbal, written, signing or technology)

You do not have to face dementia alone. Talk to someone: your caregiver, family, doctor, a trusted friend, minister, healthcare professional, call the First Link Dementia Helpline at 1-800-936-6033.

Do not go through this journey alone. Do not surrender to dementia; don’t be the person with dementia but rather the person with dementia.

More Dementia Aware articles

About the Author

Tracey Maxfield, RN, BSN, GNC(c), DDS, is a dementia educator, consultant and advocate with over 35 years working with dementia populations in the U.K. and Canada.

She has worked in a variety of heath-care settings: acute care, palliative care, community care, residential care, physicians offices and community health centres.

Tracey has appeared on the U.S. radio shows Caregivers With Hope and Alzheimer’s Speaks, and has a dementia column in an on-line medical and holistic magazine, The Scrutinizer. 

She is a the Purple Angel Dementia Ambassador for the Central Okanagan, and sits on the board of directors for Seniors Outreach Society, and is a committee member of the Better At Home program.

She can be reached at [email protected].

The views expressed are strictly those of the author and not necessarily those of Castanet. Castanet does not warrant the contents.

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