How to understand and plan home care for a loved one with Dementia – A Layman’s guide

This article is to help family members understand key considerations for helping take care of a loved one with Alzheimer’s or Dementia in a high quality, smooth and budget conscious manner.

Understand the macro environment:

Over the last 5 years, a lot of attention has gone into raising money, awareness and driving positive policy changes. For example, the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act passed in 2018 was an excellent bipartisan effort promoting investments for people affected by Alzheimer’s. BOLD helped improve public health to increase early detection and diagnosis, risk reduction and caregiving support for Alzheimer’s. In early 2021, Congress increased funding and passed the Younger Onset Alzheimer’s Disease Act as part of the Older Americans Act and the Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act.  In Texas, per Alzheimer’s impact movement (AIM), an advocacy group, Alzheimer’s is the 6th leading cause of death in Texas. Deaths due to Alzheimer’s increased 217% since 2000. During COVID-19, deaths from Alzheimer’s and dementia were 26% higher than the baseline.

When you are planning for in home care for a loved one with Alzheimer’s or Dementia, first and foremost you need to get the basics right:

  1. Know your loved one’s condition as well as possible. For example, how many years has it been since a diagnosis of their Alzheimer’s or Dementia? Both are cognitive disorders and manifest themselves and progress differently. It is important to understand the impact of the condition on the person’s personality and behaviors. Is memory impaired or are their social filters getting impaired? Do they remember aspects of their life from 1 month vs 1 year vs 5 years ago?
  2. Chronic conditions in addition to Alzheimer’s or Dementia – More than 95% of people living with Alzheimer’s have one or more other chronic conditions. This includes 38% of people with Alzheimer’s that also have heart disease and 37% that also have diabetes. It is critical to know what is the progression of each of these conditions in addition to Alzheimer’s or Dementia. A lot of this context is important in balancing physical vs mental exercises or lack thereof, diet intake and medication intake that are related to such comorbid and chronic conditions.
  3. The more we know about your loved one’s situation, the more likely our caregiver team can personalize care and apply person-centered care – a best practice approach. From the perspective of individuals living with dementia, quality care includes person-centered care techniques that address their unique experiences and needs, which is contrary to a “one size fits-all” approach.

Plan for experienced in home care for a loved one with Alzheimer’s or Dementia:

  1. An expert in home care provider will work closely with you as a coach to help you develop a personalized care plan balancing the specific and personalized needs of your loved one with the number of hours of support needed on a daily or weekly basis and your budget.
  2. Caring for a person with Alzheimer’s or Dementia is NOT a cookie cutter skill – when comparing in home care companies, more than prices, it is critical to understand the skill set and experience level of the home care company and its caregivers that are sent.
  3. For example, we try not to field any caregiver with less than a decade of hands-on caregiving experience in a case involving Dementia or Alzheimer’s since hands on expertise and experience matter tremendously. To provide quality care to people living with Alzheimer’s or dementia, we follow a few key principles to ensure reliable and compassionate care:
      • Get to really know the person deeply.
      • Maximize independence, when possible, without compromising person’s safety.
      • Practice patience and compassion.
      • Personalize care to meet individual needs and preferences.
      • Adjust care approaches to reflect day-to-day needs (e.g. physical exercise, vs mental stimulation via board games and crossword puzzles) and abilities.
      • Provide engagement opportunities that have personal meaning and purpose.
      • Ensure close coordination among those who provide care – both professional caregivers and family members that are providing hands on care after hours.
      • Create a safe and supportive environment that reflects the person’s characteristics, personality and preferences.
  4. Balance time and cost – It is important to think through your budget and how to maximize care across hiring professional caregivers and your family’s ability to support. For example, some clients looking to maximizing their dollar goes will concentrate professional help into 4 hours to stay within budget. But, even with a 4-hour hourly schedule, whether this is 8 AM to 12 PM, or 2 PM – 6 PM, needs to be personalized to whether your loved one should be taken on a morning walk or should be engaged in a board game in the afternoon post lunch. Similarly, some client families are able to take care of their loved one in the evenings and not in the mornings.

In our experience, in addition to having positive intent, for you to successfully arrange reliable and compassionate care to a loved one with Alzheimer’s or Dementia takes careful upfront planning and coordination with your in-home care company. This is especially crucial since these conditions are progressive in nature and evolve very differentially and in a personalized journey for your loved one. Relying on experts like us that have supported more than a thousand clients with Alzheimer’s or Dementia in the DFW area for over 15 years will help you access expertise and experienced caregivers to support your loved one. Unlike big agencies or corporate run services, we are a local, family run company and our personalized focus starts and remains with you. We never forget that our clients have placed an enormous amount of trust in us to take care of them loved ones. We hope this article provides you helpful information in your journey. At your convenience, we are available to discuss your specific needs. Thank you for reaching out and placing your trust in us.

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