Age-Related Macular Degeneration - What It Is, And How Family Caregivers Can Help
What it is
Age-related macular degeneration (AMD) affects the eye’s direct line of sight. The area at the back of the eye that registers light sensitivity is the retina and the macula is a component of it. Other parts of the retina recognize peripheral sight. This eye disease involves damage to the macula and is due to aging. An eye doctor diagnoses it. The macula measures approximately less than a quarter of an inch in diameter and is responsible for visualizing fine detail and recognizing how vivid the colors are of what we see.
As the disease progresses into later phases, the capacity to drive vehicles efficiently diminishes, as well as the ability to visualize faces and decipher the tiny written text.
Risk factors for AMD may include:
People aged 55 and over are more susceptible to it. With greater age, the risk for AMD may increase.
Caucasian ancestry
History of smoking
Someone in your family has AMD
Obesity
Cardiovascular disease
There are two categories of age-related macular degeneration – dry and wet. More than 4 out of 5 Age-Related Macular Degeneration patients are diagnosed with dry age-related macular degeneration (AMD).
I’ve summarized the symptoms:
Dry
The middle of the direct line of sight becomes somewhat blurry
If facing someone, because the direct line of sight is blurry, one may not recognize that person
Generally painless
Develops slowly
Lines on an Amsler Grid¹ appear wavy, broken, or distorted
Hard to see in dim light when reading or doing close-focus tasks
Words on the written page indistinct
Can occur in one or two eyes. If in one eye, you may not notice because the other eye compensates for focus
Drusen are yellow deposits behind the retina. Its appearance signals the early stage of dry age-related macular degeneration
Less severe of the two: dry and wet macular degeneration respectively
As dry macular degeneration progresses, it could involve a slow atrophy of the retina
Wet
Vision may decline rapidly
Can produce significant vision changes
Blood and fluid may leak into the retina
Current treatments if appropriate vary, so it’s best to consult with your eye doctor.
Roadmap to successfully thriving with AMD
Winning mindset
With varying degrees of AMD, there is loss. The potential loss of many things – the ability to drive, read, and recognize faces among others. As a family caregiver, you may see that your elderly loved one may be discouraged. Ophthalmologist and Retina Specialist Aleksandra Rachitskaya, MD commented in an online Cleveland Clinic article,
“There are higher levels of depression among people who have vision loss, and that’s understandable. Learning to live with limited vision takes work to get used to, not only physically but socially and emotionally as well. There are many recourses available.”2
Remind your elderly loved one they have a safety net of people who care.
Determine that you will identify resources and best utilize those resources. Gently communicate your resolve that together you’ll face this new challenge. Above all, listen to their heart. Sometimes it may mean long periods may be spent in silence. That’s okay. Your presence will do wonders. Affirm them and reassure them that they are not alone. Paint a brighter future by reviewing the family calendar. Announce upcoming family celebrations and get-togethers. That will help them have something to look forward to. In your conversations, discuss things to be thankful for. In this manner, you’re helping them address AMD gracefully, one day at a time.
Organize their personal space
You’ll need to rethink and redesign where and how everyday items are stored for your elderly loved one. Think through the progression of the ‘day in the everyday life’ of your loved one. Start from when they are still in bed before the start of the day.
From the bed: nightstand. Bright lamp. Eyeglasses, TV remote, hearing aids, walker, and cane need to be within reach
Flashlight
Magnifying glasses
Area task (with bright lumen) light
House slippers set out
Clear pathways
Lay out clothes for the day – help select an outfit they will wear. Trouble seeing hues, shades
Bathroom: contrasting colors for hand towels, hair brushes
Keep toiletries orderly. Encourage them to return these to the same place after use. Label with large print.
Bending over may present a fall risk. Try to keep everything hip level or higher.
Declutter
Simplify
You’ll need to help them place things back in the same place, for their convenience and safety.
Build routines. Frequently review these so that the routines become second nature. It will quell anxiety about dealing with their AMD condition and it will increase their confidence.
Home living areas
Eliminate tripping hazards
Use non–slip rugs
Bundle with safety ties: Extension cords, phone and other electronic device charging cords
Well-lit hallway, living room
Motion sensor lights and or those which turn ond an off with darkness and light respectively
Contrasting colors for where many items in the home:
The locations of light switches and electrical outlets
Color of the sofa, throw pillows, lap blankets
Contrasting bright colored tape to identify stair step edges, handrails or the perimeter of area rugs
Create ‘centers’ where like things are stored next to like things
On the lampstand next to the easy chair
Crossword puzzles, pens
Eyeglasses
Coffee trivet
Napkins
Trash can
Area task (with bright lumen) light
Make use of tactile aids – use craft glue and beads to help your elderly loved one feel where the switch for the lampstand is. Some lamps and televisions can be turned on with a clap.
Alexa™ and Siri™ can help with many tasks such as turning on lamps – more on how these may help with other household tasks in the home technology section below.
Height of easy chair – consider a power lift recliner chair
Clearly labeled routinely used items:
House keys
Thermostat
Dog leash
Kitchen
Use bump dots adhesive stickers for the visually impaired for these spots:
On/off switch for coffee pot or device used to boil water
Microwave on/off switch – and frequently used warming time (i.e., One minute, two minutes, three minutes)
Automatic dishwasher on/off and frequently used cycle(s) switches
Clearly label measuring cups/spoons
Pre-measure ingredients for recipes
Consider helping your elderly loved one by meal prepping. See the related blog post in the resources list
Contrasting color coffee mug
Solid color eating plates
Contrasting color placemats
Use tools to make cutting vegetables easier. Food processor.
Consider using frozen vegetables. Often harvested and quickly frozen, ensuring nutritional value
Simplify the recipes. Choose recipes that have low ingredients. Make use of convenient cooking appliances such as the slow cooker, the electric pressure cooker, and the air fryer or the Suvie™ Kitchen Robot.
Home Technology
Adaptive watch
Adaptive cell phone. Larger numbers, bright background light for both, respectively
Larger TV monitor/screen
Larger computer monitor/screen
Do research on securing the best voice-to-text apps
Gmail™ has voice-activated text.
Learn all the functions of Alexa™ and how you can start and expand connecting your smart home to Alexa.™3 by clicking on the URL in the corresponding footnote below.
Meanwhile, Apple™4has developed Siri™ to also help with smart home connectivity. Learn its functions by clicking on the URL in the corresponding footnote below.
Robot vacuum
Although it’s not a true ‘home technology’, I thought it might help to recommend that you consider hiring landscaping ‘mow and blow’ type and household maid services respectively to help with household tasks.
Education is a key component
Help with reading
Robin Walker is a Professor of Cognitive Neuroscience from Royal Holloway University of London.
He has studied eccentric viewing to find ways to help people with age-related macular degeneration.5 He developed two free apps. In the resource list and footnotes, the URL from this above footnote will describe both eccentric viewing and the benefits of these apps in greater detail.
Videos and other information
Educational Videos:
The American Macular Degeneration Foundation has produced some wonderful educational videos. In the footnote section below, please click on the link. It will allow you to click on the following:
Macular Degeneration Video Library6:
Life with Macular Degeneration Patient Stories
Eat Right For Your Sight Cooking Show
Educational Webinars
Low Vision Aids and Modifications
Amsler grid
Amsler grid to look at daily, to ‘detect’ changes in your retina and therefore, your direct line of sight vision. See straight lines, okay. See wavy lines – need to see a specialist asap.
This resource is found in the footnotes below (access the Amsler Grid, scroll down below the video featuring Laura Carabello)7
Learn from other resources
Please click on the links from the resources listed in the Resources List below.
Frequent medical check-ups
Consult your doctor to learn more about the eye disease, what steps you can take to possibly slow the progression of it, and know how frequent your eye exams should be.
How our agency can help
Our caregivers have compassion for the situation. They can focus on what the elder is capable of doing, not on the disabilities. They can help with organizing the day. Help pick out clothes, be a help with everyday tasks such as preparing coffee, and breakfast, reading morning devotionals together, and planning outings for the day. They can assist with fine motor skills-type tasks requiring close-up vision.
Our caregivers can do the driving to doctor appointments, errands, or a fun drive. Caregivers can help in social interactions. They can help with introducing acquaintances, and relatives. When appropriate they can cue the elder who may be approaching their direct line of sight to speak with them. Above all, they can provide a pleasant human presence, and calm reassurance to address the isolation your elderly loved one may feel. Please call us. We’d love to help you. Telephone: 805-238-3500.
Resources list:
Staff writers (retrieved 5-13-24) Age-Related Macular Degeneration (AMD) At A Glance. National Eye Institute. Found here: https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/age-related-macular-degeneration#:~:text=Age%2Drelated%20macular%20degeneration%20(AMD)%20is%20an%20eye%20disease,the%20back%20of%20the%20eye).
Staff writers Practical Advice for Your Home and Life When You Have Wet Age-Related Macular Degeneration. (9-28-23). Cleveland Clinic (retrieved 5-13-24). Found here: https://health.clevelandclinic.org/home-modifications-for-macular-degeneration
Staff writers. Dry macular degeneration. Mayo Clinic. Retrieved (5-13-24) Found here: https://www.mayoclinic.org/diseases-conditions/dry-macular-degeneration/symptoms-causes/syc-20350375
Staff writers. Health section. Age-Related Macular Degeneration (AMD). John Hopkins Medicine Retrieved (5-13-24). Found here:
Staff writers. What is the macula? Macular Society: Beating Macular Disease. Macula Society. (Retrieved 5-13-24). Found here: https://www.macularsociety.org/macular-disease/macula/#:~:text=The%20macula%20is%20part%20of,detail%20of%20what%20we%20see.
Staff writers. Understanding Color Vision Changes in Macular Degeneration. Low Vision Support. (2-2-24) (Retrieved 5-14-24). Found here: https://www.lowvisionsupport.org/understanding-color-vision-changes-in-macular-degeneration/
Staff writers. Age-Related Macular Degeneration (AMD) Research and Treatment. Retina Foundation (Retrieved 5-14-24).Found here: https://retinafoundation.org/amd/?gad_source=1&gclid=EAIaIQobChMIxIrR6rONhgMVZBStBh2Z3AspEAAYASAAEgKXmvD_BwE
Staff writers. Assistive Technology for Age-related Macular Degeneration. American Macular Degeneration Foundation (Retrieved 5-14-24). Found here: https://www.macular.org/living-and-thriving-with-amd/tools-for-living
Staff writers. Emotional Well Being. American Macular Degeneration Foundation (Retrieved 5-14-24). Found here: https://www.macular.org/living-and-thriving-with-amd/emotional-well-being
Staff writers. AMD Diet and Nutrition American Macular Degeneration Foundation (Retrieved 5-14-24). Found here: https://www.macular.org/living-and-thriving-with-amd/nutrition
Altomara, Deanna. Medically reviewed by Whitney Seltman, OD. Staying Organized with AMD. (2-21-23) WebMD. (Retrieved 5-15-24.) Found here: https://www.webmd.com/eye-health/macular-degeneration/organize-home-for-amd
Staff writers. Good Morning America: How to design a safe home for people with wet age-related macular degeneration / GMA (May 2020). Youtube video. Good Morning America. Retrieved (5-15-24). Found here: https://www.youtube.com/watch?v=E6FA096C-YU
Staff writers. Free Apps Designed to Help People with Macular Degeneration Read. Paths to Literacy.
(Retrieved 5-15-24). Found here: https://www.pathstoliteracy.org/resource/free-apps-designed-help-people-macular-degeneration-read/
Staff writers. Living with Macular Degeneration – Liz Tully: Living Alone with Macular Degeneration (patient story). YouTube video. American Macular Degeneration Foundation. (February 2024) (Retrieved 5-16-24). Found here: https://www.youtube.com/watch?v=b_LMSuTncaw
Footnotes:
¹Merriam Webster online dictionary. The words Amsler grid. (Retrieved 5-16-24). Found here:
https://www.merriam-webster.com/medical/Amsler%20grid
2Staff writers Practical Advice for Your Home and Life When You Have Wet Age-Related Macular Degeneration. (9-28-23). Cleveland Clinic (retrieved 5-13-24). Found here: https://health.clevelandclinic.org/home-modifications-for-macular-degeneration
3Alexa™, part of Amazon™. Smart home connectivity. (Retrieved 5-15-24). Found here:
4Siri™, part of Apple™. Smart home connectivity. (Retrieved 5-15-24). Found here:
5Staff writers. Free Apps Designed to Help People with Macular Degeneration Read. Paths to Literacy.
(Retrieved 5-15-24). Found here: https://www.pathstoliteracy.org/resource/free-apps-designed-help-people-macular-degeneration-read/
6Staff writers. Videos about Macular Degeneration. American Macular Degeneration Foundation (2023) (Retrieved 5-14-24). Found here: https://www.macular.org/resources/video-presentations
7Staff writers. Videos about Macular Degeneration. Macular Degeneration Patient Stories – Laura Carabello. American Macular Degeneration Foundation (2023) (Retrieved 5-14-24). Found here: https://www.macular.org/resources/video-presentations/life-with-macular-degeneration-laura-carabello
Related Article:
Yee, Bradley. Meal Prepping For Family Caregivers (May 2024). Christian Love Home Care. (Retrieved 5-16-24). Found here: https://christianlovehomecare.com/meal-prepping-for-family-caregivers/
