Patient Advocates Support Caregivers & Loved Ones with Dementia & Alzheimer’s Decision to Stay at Home.

What are Dementia and Alzheimers

As patient advocates, we know that discovering that a loved one has some form of dementia can be devastating for families and they can become overwhelmed very quickly. Dementia mostly affects older adults and it is not a part of normal aging.
We also know that families would much rather keep their loved ones at home than for them to go in memory care or Long term care.  However, keeping them at home can be a big task to take on, as patient advocates, we partner with our clients to determine the best plan of action to keep them at the home long term.

Make note that the caregiver burden is very real and once the role of caregiver is established, you should start thinking about how you will give yourself or the main caregiver respite. A great source for respite services is your local area’s Agencies on Aging. Check the website for the agency in your area

Respite care allows the caregiver some time off from their caregiving duties. This can be in the home, participating in adult daycare, or short-term nursing home care if you need a longer break. There are lots of creative ways to get caregiver support; as patient advocates that one of the things we ensure our clients get.

Dementia or Alzheimer’s

The CDC has great information as it recognizes the effect all forms of Dementia have on our aging population in the United States.
Dementia is not a specific disease but is rather a general term for the loss of memory, thinking abilities, or decision-making that interferes with doing everyday activities. Alzheimer’s is the most common cause of dementia.

Alzheimer’s disease is the most common type of dementia. This disease is progressive and begins with mild memory loss, which most often leads to the loss of the ability to carry on a conversation and respond to the environment. Usually, it will seriously affect the ability to carry out activities of daily living. The part of the brain affected deals with controlling thoughts, memory, and language.

The Alzheimer’s Association offers lots of great resources and even free training.  Here’s a link to a Free e-learning course about understanding Alzheimer’s and Dementia.

The Stages of Alzheimer’s disease

Early-stage Alzheimer’s

  • Not remembering, episodes of forgetfulness, forgets names of family or friends
  • Changes may only be noticed by close friends or relatives
  • Some confusion in situations outside the familiar

A person may be very independent in this stage, may still drive and be a part of social situations.

As patient advocates, we suggest that this stage is the best time to be sure all your paperwork is in order. Take control of as much as possible. Be sure all your financial and health power of attorney is in order. Advance Health Care Directives are very important as well to ensure the end-of-life planning is complete.

Middle Stage Alzheimer’s

  • Greater difficulty remembering recently learned information, Deepening confusion in many circumstances
  • Problems with sleep, Trouble determining their location

Middle-stage Alzheimer’s is typically the longest stage and can last for many years. Symptoms become more pronounced. The person may confuse words, get frustrated or angry, and act in unexpected ways.

During this stage, the caregiver may be looking for additional support in caregiving. Such as adult daycare, or a caregiver for several hours during the day.  As the disease progresses, the person with Alzheimer’s will require a greater level of care.

This may be the stage where you would consider looking at memory care facilities or opening up a Long Term Care Claim to assist with the coverage of additional caregivers. This can be very overwhelming and be sure you have someone that can help you.

If you find that you are alone caring for a loved one with Alzheimer’s, remember that patient advocates are very experienced in assisting families in taking the next steps when loved ones need that extra level of care.

Late-stage Alzheimer’s

  • Poor ability to think, Problems speaking, Repeats same conversations,
  • More abusive, anxious, or paranoid

At this stage, symptoms are now severe, and eventually, individuals lose the ability to respond at all.  The individual will now be advancing towards total care needs. This will require extensive coordination of care to maintain at home, and will likely be considered an individual that would also meet the nursing facility level of care.

Always bear in mind a caregiver for an individual with Dementia or Alzheimers will need help. If you are worried about providing enough support, contact a patient advocate for assistance. An independent patient advocate will always give you a free consultation. You can ask if what your doing is enough and if there are more resources available to you.