The Journey of Caregiving
​​There is no question that caregiving is a big job and can be overwhelming at times. 
Having access to support and resources along the way, as well as the assistance of family, friends, neighbors, and community can ease the sense of burden and make caregiving a much more positive experience.

What to Expect as a Caregiver
​Each person’s experience with Alzheimer’s Disease and other dementias is different.  People with Alzheimer’s Disease experience changes on an ongoing basis.  One day may not be the same as the next and sometimes there is a period where things stay the same for a while. When this happens, it is easy to believe that things are going to stabilize, and then the next day it changes again.
Those who care for a person with Alzheimer’s Disease speak to the importance of living “in the moment”.  Those moments of sharing stories from the past, their laughter, their smiles and contentment and mutual love can bring them joy.  Taking the time to learn more about a person interests, hobbies, skills, and enjoyable times can create opportunities for meaningful communication.

Early Stages – Warning Signs & When it is Time to Get Help
​In the early stages of Alzheimer’s Disease, the person usually knows something is not right.  When they feel this, they can react with anger, panic, or sadness, but in most cases the real overall feeling is fear and uncertainty. 
Some signs that family, friends, and neighbors may see when a person is experiencing the onset Alzheimer’s Disease or other dementias include:

• Frequent (i.e., more than usual) misplacement of items and difficulty recalling or retracing steps. 

• Gradual withdrawal from work or social activities; decrease in social confidence.

• Changes in in mood or personality.

• Decreased sense of balance or change in gait (i.e., walking pattern).

• Repetition and or word finding/filling issues (e.g., asking the same question repeatedly even after having been answered, having more than usual difficulty recalling words, and/or filling blanks with incorrect words).

• Changes in financial management skills (e.g., increased errors in managing checkbook or checking account, forgetting to pay bills and receiving second or third notices, succumbing to scams, forgetting about purchases or spending money).

• Decreased interest in or ability to pursue skills, hobbies, or regular routines (e.g., struggling to follow a recipe when he/she has always loved to cook, difficulty using a coffee maker, neglecting personal hygiene, etc.).

• Disorientation or difficulty with way finding when traveling to common destinations (e.g. workplace, local grocery store, family members, place or worship or home).  Note: A person may develop poor navigation skills and have difficulty or become flustered figuring out how to get back on track; he or she may become disoriented when running an errand and forget where they are or why they are in that location .

• Memory loss impacts everyday tasks that may pose safety or health concerns (e.g., leaving burners on, letting a dog outside and forgetting, not remembering to eat or repeatedly forgetting to have eaten).

• Sleep issues or increased confusion at night. Note: Increased confusion in the evenings is referred to as Sundowning.

• Increased attempts to leave home or other spaces for a specific destination or with no destination at all.  This is often referred to as elopement or wandering. ​Note: Smart devices, trackers, alarms, and cameras are available to help ensure a person does not wander unsafely during the day or night.  While locks are important to create security, locks should not be used to create a restraint or unsafe situation for the person with dementia or others.

Caregiver Support and Resources
Role and relationship changes take place over time - sometimes without even being aware.  Family members may find themselves providing more support and assistance than previously as they transition from Spouse or Child to Caregiver.
A caregiver’s role often becomes consuming and any respite and/or assistance is generally appreciated.  In some cases, a caregiver becomes so overwhelmed that he or she may not be able to express exactly what kind of help they need. Some helpful approaches to supporting a caregiver include:

• offer to cook or purchase a meal to deliver.

• help with household chores, repairs or yard maintenance.

• run errands for groceries, medication, etc. - or spend time with the person with dementia while the caregiver runs errands.

• offer to drive to appointments or assist with making appointments.

• spend time and visit for a while.

• provide respite: spend an hour or two while the caregiver has lunch with a friend or goes shopping or takes in a movie or goes to a support group, etc.

• encourage the caregiver to practice good self-care by keeping his or her own medical appointments, exercising, socializing, and getting as much sleep as possible.

• help brainstorm ideas to for engagement (e.g., go for walks or exercise together with bands,  selecting puzzle or game that both the caregiver and person with Alzheimer’s Disease can do together,  make picture album that can be used to reminisce and enjoy the memories, cook favorite meals, etc).
• research local resources and support groups; suggest additional help as the disease progresses and to prevent the caregiver from burning out or becoming ill themselves.