Dementia and Caregiver grief Part 1: Lessons from Hospice

Aging can be a difficult process. Between aches and pains, forgetfulness, diminished independence, and career and retirement worries, getting older can be complicated and scary. Roles are often reversed between parents and children, as elders become less able to take care of themselves and adult children take on increasing responsibility as caregivers. Sometimes, though not always, dementia and other cognitive diseases accompany the aging process and the end of life. Through working in hospice with families managing these illnesses with their loved ones at the end of life, I've compiled some helpful information. Let's go over the basics.

First, according to Alzheimer's Association at Alz.org, dementia and related disease affects more than 5 million people in the US, and disproportionately affects women over men. There are many different types types of diseases that involve dementia and cognitive decline, and lots of medical terminology describing the different symptoms you may see. 

Dementia is a general term referring to a decline in mental ability accompanied by memory loss, difficulty communicating, and disorientation to people, places, or things that were once familiar. The distinct types of dementia result from the different areas of the brain that are affected. 

Alzheimer's disease is a form of dementia caused by abnormal proteins around brain cells, beginning in the hippocampus which is responsible for memory. The disease has distinct stages with a progressive decline in mental functioning, with the hallmark first symptoms being the inability to learn and retain new information. Someone in the initial stages of Alzheimer's may experience mild forgetfulness or difficulty choosing the right word in conversation. Over time, organizing and managing daily tasks becomes harder, remembering things that happened a short or long time is harder, and communication with spoken and written words becomes more difficult. Difficulty using language is called dysphasia or aphasia. 

The middle stages of Alzheimer's disease can involve wandering behavior and increased disorientation. The individual may have lapses in memory of details of their lives, like their name or address. They may need to be reminded how to dress properly for the weather, or prompted to initiate daily tasks like eating, bathing, or going to appointments. They may become unable to cook independently, leaving pots over lit burners, or leaving the gas on the stove. Risk of becoming lost and being unable to return home increases during this stage.

In the final stages, the loved one loses recognition of family members and caregivers by name, though they may recognize familiar vs. unfamiliar faces and have flashes of intact memory. Their personality may change dramatically. They may become verbally and physically aggressive. They may become incontinent, needing assistance with toileting and feeding. The ability to use and control muscles is diminished and they are unable to move about on their own. They may have difficulty swallowing, and their immune system is compromised. If you want to learn more about the signs, symptoms, and stages, click here for a 10 sign of Alzheimer's checklist. I will describe other forms of dementia in later posts, including vascular dementia and dementia with lewy bodies.  You can learn more now about these conditions by visiting the Alzheimer's Association Dementia page here. 

Now let's turn to caregiver grief. Grief is an important concern for family members witnessing the mental decline of a loved one, especially for those responsible for helping with day to day tasks.  Depending on the severity of the illness, family members may choose to care for the patient at home or move them to an assisted living or nursing facility. There are many different levels of retirement and nursing facilities. Let's go over some of the terms used to describe them.

Many retirement communities offer services on a continuum based on need. Independent living is at the least restrictive end of the continuum. The patient has their own apartment within a retirement community, is responsible for their own meals and daily schedules, but have access to amenities like transportation, social events, activities, and common social areas. Assisted living is a next step when patients' needs become higher, and involves helpers in the home to assist with tasks like cleaning, meal preparation, medication adherence, and assistance with bills. Some facilities provide all meals in a dining hall type environment for those needing this level of care. Skilled nursing is an added service in some facilities when patients' medical conditions require daily health monitoring.  Memory care is an even more intensive nursing environment for dementia, where patients are typically confined to one area of the facility to prevent wandering, and are monitored 24/7 for medical need. Hospice care is offered in addition to any of these levels of care when patients are diagnosed with a terminal illness and expected to live less than 6 months.

Some families decide to keep patients at home throughout the course of illness, with family members primarily responsible for looking after the patient's day to day needs. Home health and hospice care can provide additional support to family in the home. Some families hire private health aides in addition to home health or hospice to give family members a break or allow them to continue working. Many primary caregivers become exhausted with the round-the-clock care that dementia patients require in the late stages of their illness. Because caregiver burnout is common, the importance of self-care can't be over-stated. I will dedicate future posts to this topic.

As patients with dementia are unable to do things independently, become combative, and sometimes dramatically change personality, caregivers and especially their adult children, must adjust to the loss of the person/mother/father they used to know.  Because the loss of the relationship happens gradually through the mental decline but before death actually occurs, the grief process is unique and starts early. I will write future posts on this topic, but in the meantime for more information, visit the grief section of AARP's caregiving website.

Look for future posts on other types of dementia, caregiver self care, and caregiver grief. And as always, if you or someone you know if suffering from grief of any kind, please call a counselor. Grief counseling can be a valuable source of support as you experience loss of any kind.