Dementia and Alzheimer’s: Walking out of Reality
Loosing someone when they are still there...
Supporting someone you love with Alzheimer's or any form of dementia will probably be one of the most challenging things you will ever do. The person you knew and loved gradually fades and becomes some-one else which could leave you feeling angry, frustrated, and often overwhelmed by sadness, guilt and even regret for things said and done... or not said and done sooner.
The gradual decline makes it difficult to determine exactly when different parts of your loved one leaves the room, but on a day you realise that a certain part of them is no longer there, and then another and another …. Sometimes the missing part is replaced by someone completely different with uncharacteristic outbursts of aggression, mood swings and tears which can be confusing and frightening for both of you. And sometimes parts or their personality just go missing and lost forever without anyone real;ising when it actually happened.
Timelines often become confused for the dementia sufferer, and they can revert back to reliving fears and traumas from the past. These can now become the sufferer’s perceived reality with them reacting as if these are current events. Sometimes it is dreams and fears that they had but never materialised and never were a reality though these fears have been floating around their subconscious. This can make it more difficult for family and carers to understand.
The grief starts on the day of diagnosis. Both you and the person getting the diagnosis will be going through stages of grief starting with denial. It is difficult for you to accept the loss when they are still there and mostly still look and sound the same. The first stage of grief is denial. It is also difficult for the person with dementia to come to terms with it when they feel exactly the same as the day before. The prospect might initially be too difficult for you to contemplate or even discuss. This is often followed by anger. The anger and resentment can be directed towards the person who has dementia, yourself, God, the universe or whatever is in front of you. The stage of depression is characterized by feelings of sadness, emptiness, and despair. You may withdraw from each other and others losing interest in activities you used to enjoy. At some point you will reach a level of acceptance and normalisation of the process which is ever changing as the decline continues.
Early diagnosis gives the opportunity for the patient to have agency in their treatment and care. It is important for all parties that the person diagnosed with dementia be seen and heard for as long as possible respecting their humanity and dignity. There are important practical arrangements to be made like getting a will set up while they are ‘of sound mind’, getting finances in order and a lasting power of attorney as well as looking at the care options available including end of life provision. These will be difficult discussions, but it will make the rest of the journey easier.
There are adjustments to daily life you can make to prolong the patient’s levels of alertness and autonomy.
Routine and consistency are important. Keeping a regular daily routine for activities like bathing, dressing, and eating can help reinforce a sense of familiarity and security. Make exercise part of the routine, e.g. a daily walk, going to a gym or even just some dancing around the house. Keep them moving.
Communication will gradually become more difficult. Use simple words, short sentences and clear pronunciation. Be patient giving them time to respond. Support verbal communication with gestures, pictures, and other visual aids to help communicate.
Safety and comfort are important. Make sure their living space is safe and easy to navigate removing potential hazards and ensuring good lighting. Check that they are comfortable with appropriate clothing and bedding as they will become less and less able to do that for themselves. Keep clothing loose and comfortable with as few buttons and complicated fastenings as possible.
Engagement in activities will keep patients active longer. Plan activities related to their interests and can do safely including puzzles, music, and simple household tasks. Research has shown that the ability to sing and engage with music will last even after coherent speech stops making it a particularly important part of the daily routine. Social interaction and visits from family and friends keeping them socially engaged are invaluable.
Your loved one will be feeling vulnerable from the day of diagnosis and have some awareness of their decline. Offer emotional support through empathy and understanding. Acknowledge their fears and feelings by providing reassurance that they will be loved and cared for. Use positive reinforcement avoiding arguing or correction unnecessarily.
Give practical help in the form of To-Do Lists. Help them write down to-do lists, appointments, and events in a notebook or calendar. Label drawers and cupboards indicating the contents with a picture or simple word while they are able to read. Put a laminated copy of their name and a contact number in their pockets should they wonder off and get lost.
Make sure there is sufficient self-care for caregivers and significant others. Make sure to take breaks and look after your own health and well-being.
Consider joining a support group for significant others and caregivers to share experiences and get advice. The internet will be able to tell you where you can find support groups both locally and on-line.