One of the most difficult situations to deal with when caring for a loved one with a brain disease such as dementia, is when the patient cannot clearly communicate his/her wants and needs.  Even when we have provided the necessary home-care or nursing care for their safety, we worry how their emotional safety and if their needs are being met.   How can our loved ones communicate needs, interests and desires when they can’t clearly communicate?

The Alzheimer’s Association has some good resources for communicating with Alzheimer’s patients as they progress.  You will want to spend a great deal of time reading from the resources here.

This is Me!

One idea is to create a “This is Me” document for caregivers to have access to when they care for your loved one; either at home or in a facility.  Ideas to include in the document (worded as you speaking for the patient).

• Name I like to be called.
• Where I live: The area (not the address) where you live and how long you have lived there.
• The person(s) who knows me best: This may be a spouse, relative, friend or care-worker.
• I would like you to know: Include anything you feel is important and will help staff to get to know and care for you, eg I have dementia, I have never been in hospital before, I prefer female caregivers, I am left-handed, I am allergic to…, other languages I can speak.
• My background, family and friends (home, pets and any treasured possessions): Include place of birth, education, marital status, children, grandchildren, friends and pets. Add religious or cultural considerations.
• Current and past interests, jobs and places I have lived and visited: Include career history, voluntary experience, clubs and memberships, hobbies, sports or cultural interests, favorite or significant places.
• The following routines are important to me: What time do you usually get up/go to bed? Do you have a regular nap or enjoy a snack or walk at a particular time in the day? Do you have a hot drink before bed, carry out personal care activities in a particular order or like to watch the evening news?
• What time do you prefer to have breakfast, lunch, evening meal?
• Things that may worry or upset me: Include anything you may find troubling, eg family concerns, being apart from a loved one, or physical needs such as being in pain, constipated, thirsty or hungry. List environmental factors that may also make you feel anxious, eg open doors, loud voices or the dark.
• What makes me feel better if I am anxious or upset: Include things that may help if you become unhappy or distressed, eg comforting words, music or TV. Do you like company and someone sitting and talking with you or do you prefer quiet time alone?
• My hearing and eyesight: Can you hear well or do you need a hearing aid?
• How is it best to approach you? Is the use of touch appropriate?
• Do you wear glasses or need any other vision aids?
• How we can communicate: How do you usually communicate, eg verbally, using gestures, pointing or a mixture of both? Is the use of touch appropriate?
• Can you read and write and does writing things down help?
• How do you indicate pain, discomfort, thirst or hunger? Include anything that may help staff identify your needs.
• Are you fully mobile or do you need help? Do you need a walking aid? Is your mobility affected by surfaces? Can you use stairs? Can you stand unaided from a sitting position? Do you need handrails? Do you need a special chair or cushion, or do your feet need raising to make you comfortable?
• What physical activity do you prefer?
• My sleep: Include usual sleep patterns and bedtime routine. Do you like a light left on or do you find it difficult to find the toilet at night? Do you have a favored position in bed, special mattress or pillow?
• My personal care: List your usual practices, preferences and level of assistance required in the bath, shower or other. Do you prefer a male or female caregiver? Do you have preferences for brands of soaps, cosmetics, toiletries, continence aids, shaving or teeth cleaning products and dentures? Do you have particular care or styling requirements for your hair?
• How I take my medication: Do you need help to take medication? Do you prefer to take liquid medication?
• My eating and drinking: Do you prefer tea or coffee? Do you need help to eat or drink? Can you use cutlery or do you prefer finger foods? Do you need adapted aids such as cutlery or crockery to eat and drink? Does food need to be cut into pieces? Do you wear dentures to eat or do you have swallowing difficulties? What texture of food is required to help – soft or liquid? Do you require thickened fluids? List any special dietary requirements or preferences including being vegetarian, and religious or cultural needs. Include information about your appetite and whether you need help to choose food from a menu.
• Other notes about me: Include additional details about you that are not listed above and help to show who you are, eg favorite TV programs or places, favorite meals or food you dislike, significant events in your past, expectations and aspirations you have.