If you are an adult child of a parent who has had an issue with hoarding, you may more recently have been concerned that your mother or father is now showing signs of dementia. The confluence of hoarding disorder and dementia can make your parent’s life situation far more complicated. Indeed, if you are a primary caretaker of your adult parent, your own life can become more complex.
A case study can assist you in understanding and navigating when you are an adult child of a parent with a mother or father afflicted with the onset of dementia while also diagnosed with hoarding disorder. The story of Marilyn and her sons can be helpful for a person with a parent facing this pair of diagnoses.
Marilyn was born, raised, and lived her adult life in San Diego. Marilyn was a college professor for much of her working life, until her retirement about 10 years ago, Marilyn and her husband raised two sons. She was divorced from her husband while her children were in high school. She did not remarry.
At this time, Marilyn lives in a single-family residence she has called home since her divorce. For more of her time in her home Marilyn has had no issues in regard to dealing with matters of daily living. All of that changed in the past couple of years. It was during this time period that her sons discovered that Marilyn was hoarding. More recently, Marilyn’s sons have come to conclude that she may now be facing the onset of dementia.
Signs and Symptoms of Hoarding Disorder
Psychology Today reports that there are six more commonplace signs that a person is afflicted with hoarding disorder:
- Difficulty letting go of possessions, regardless of their actual value or condition.
- Feeling a “need” to save items that may no longer be in serviceable condition and experiencing distress when letting them go or thinking of letting them go.
- This inability to let go of possessions produces a state of clutter that negatively affects living space and living conditions. Furniture becomes storage for possessions, and rooms become storage rooms; chairs and sofas may be receptacles for possessions, and there may be no way to walk through the home and no places to sit.
- The behavior leads to significant distress or impairment in multiple areas of functioning–social, professional, and health/safety conditions in the home.
- The behavior cannot be traced back to a brain injury or other medical condition.
- The hoarding behaviors cannot be traced back to other mental disorders such as obsessive-compulsive disorder, depression, psychosis, or neurocognitive disorders.
Signs and Symptoms of Dementia
The U.S. Centers for Disease Control and Prevention have identified a set of signs and symptoms that are indicative of a person afflicted with dementia. These are divided into cognitive and sensory symptoms as well as psychological ones.
Cognitive and sensory changes:
- Memory loss, generally noticed by the near and dear ones
- Difficulty in communication, especially finding the right words to communicate
- Reduced ability to organize, plan, reason, or solve problems
- Difficulty handling complex tasks
- Confusion and disorientation
- Difficulty with coordination and motor functions
- Loss of or reduced visual perception
- Metallic taste in mouth, decreased sense of smell
- Agnosia – unable to identify objects or persons
- Changes in personality and behavior
- Mood swings
- Apathy (lack of interest or emotions)
Safety Risks for Marilyn
There are some members of the general public that think dementia and hoarding disorder nearly always occur simultaneously. Indeed, there are individuals that believe that hoarding disorder is a derivative of dementia. Medically that is not the case. However, there are instances in which an individual is diagnosed both with hoarding disorder and dementia.
Marilyn’s children recognized that their mother’s hoarding disorder coupled with the onset of dementia rendered her unsafe living in her own residence alone. The combination of both conditions resulted in a living environment that presented a daily threat to Marilyn’s health, welfare, and safety.
Marilyn’s Children and an Action Plan For Their Mother
Marilyn’s children worked in conjunction with their mother and others to develop an action plan for her future. Others involved in the development of a plan for Marilyn included:
- Therapist with background in working with individuals with diagnoses of both hoarding disorder and memory issues (including dementia)
- Marilyn’s sons
- Pastor from Marilyn’s church
- Marilyn’s sisters
- Two of Marilyn’s most trusted friends
- Social worker from a retirement community
Ultimately, it was determined that Marilyn would be best served living in a retirement community with daily assistance from a home care aide. The retirement community had graduated living environments. This meant that if and when Marilyn’s dementia worsened, she could transition from the more independent living environment she moved into initially to skilled care and finally into the community’s memory center, if necessary.
With the help of Marilyn’s team, the hoarding behavior was brought under control. The team, particularly the therapist, continued to work with Marilyn and support her so that she did not relapse into hoarding behavior when she transitioned to living in a retirement community condo.