Blessed Be Those Who Care for Their Loved Ones Living with Dementia
Taken from the Vancouver Messenger
This is an article intended to share some of the challenges of caring for a loved one at home when he/she has a diagnosis of dementia. Before discussing those challenges, it is important to understand the impact dementia has on our communities in general. According to the Alzheimer’s Association’s Facts and Figures 2021:
- There are 120,000 individuals living with dementia in Washington State. By 2025, there will be 140,000, a projected 17% increase. 2/3 of those are women.
- Eighty-three percent of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers. Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia. More than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias.
- Approximately two-thirds of dementia caregivers are women.
- About 30% of caregivers are age 65 or older.
- Among primary caregivers of people with dementia, over half take care of their parents. Approximately 10% care for a spouse.
- Most caregivers (66%) live with the person with dementia in the community.
The Dementia caregiver in the home experiences many challenges. According to Health Affiairs in their January 11th, 2018 blog, A Study Of Family Caregiver Burden And The Imperative Of Practice Change To Address Family Caregivers’ Unmet Needs, the Center to Advance Palliative Care (CAPC) and the Gary and Mary West Health Institute did in-person focus groups and an online survey of over 500 caregivers. The results are as follows. Beneath each topic are actual comments from local care partners of loved ones living with dementia.
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- Dealing with memory loss and impact of the disease on your loved one
- I didn’t realize there was a problem until he lost his job.
- She was so angry when she was told she couldn’t drive.
- He doesn’t want anyone to know his diagnosis.
- She denies the diagnosis.
- I am forced to take on responsibilities that were always hers
- Handling the stress and emotional toll on self
- This is not the person I married/my mom/my dad/my sibling/etc.I miss him.
- I feel so alone/I am lonely.
- I am waiting for the other shoe to drop
- She doesn’t know me/our friends/the kids/ect
- I am so tired/sad/depressed/worried
- I can’t leave him alone/ we are together 24/7
- I am angry, this wasn’t how we were supposed to spend our retirement
- Daily Activities
- I can’t get her out of bed/to go to bed.
- He won’t/can’t change clothes/brush teeth/shave.
- I get in the shower with her to make sure she washes/rinses her hair.
- He is awake all hours/wanders around the house.
- She refuses to eat/eats too much/eats things that are not edible.
- He pees in the laundry hamper/basket/corner/ closet/etc.
- She won’t let me change her soiled underwear
- Keeping a loved on positive and motivated
- She is so depressed following the diagnosis.
- He can’t focus/follow movies/TV shows/read books.
- He sits in front of the TV all day long.
- She withdraws/doesn’t participate in family events.
- I arrange an activity he likes, then he won’t do it
- Bills, finances, health insurance
- We got behind on bills because I didn’t realize she couldn’t use the check book.
- We don’t qualify for Medicaid and can’t afford to hire caregivers
- If I place him, I will use up our savings and have nothing left to live on.
- Managing and administering medications
- I don’t know what his medications are for.
- I can’t get her to take her medications
- She doesn’t like me to manage her medications
- Even when I set up his meds in order, he will take the wrong ones at the wrong time.
- Speaking with loved one’s health care providers
- When I asked about the diagnosis the doctor told me to “Google it”
- They won’t give me a clear diagnosis.
- They don’t tell me what to do next.
- They wouldn’t let me be in the ED/hospital with him/the hospital never seems to know she has dementia.
- The Dr. doesn’t know as much about dementia as I do.
- Scheduling appointments and time management
- It takes forever for her to get dressed/eat/get ready
- I never know if he will get in the car/get out of the car.
- She walks sooo slow
- I wanted him to see a neurologist-the appointment was 6 months out.
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Clearly, the many aspects of caring for a loved one living with dementia can be overwhelming. Fortunately, Vancouver has many resources that can be helpful to the anyone who provides care in their home. Using resources, be it in the form of support groups, classes, a few hours of respite care, or regularly scheduled caregiver hours, can make the daunting task of caregiving more sustainable.
The Area Agency on Aging and Disabilities offers many caregiver programs. The Aging and Disabilities Resource Center phone is 360-694-8144. Within their comprehensive website is a specific page for caregivers of individuals living with dementia: https://www.helpingelders.org/im-a-family-caregiver/important-links/.
There are many Home Care agencies that offer caregiving, at negotiable numbers of hours. Some are contracted with DSHS, some are private pay. This website provides a listing of local homecare agencies: https://www.caring.com/senior-care/in-home-care/washington/Vancouver. It would be important to interview carefully to determine best fit for you and your loved one.
The Alzheimer’s Association provides monthly Support Groups, many are via Zoom. This link gives a listing of those in Washington available: https://www.alz.org/media/alzwa/documents/October-2021-Support-Group-List.pdf.
HOPE Dementia Support has weekly support groups that are currently virtual. The HOPE website provides a listing of dates and times. Care partners of loved ones living with dementia, regardless of relationship, are welcome to attend. The link to a list of HOPE Support Groups is:
https://hopedementiasupport.org/find-a-support-group/
Lastly, the holidays are coming and there are a couple of celebrations in the works intended specifically for the caregiver.
A Caregiver Christmas
presented by Loving Them Forward: December 7, 1100-7:00pm
Clark County Fairgrounds
Jingling for HOPE
Presented by HOPE Dementia Support December 14, 6:30-8:00
Via Zoom:
https://us02web.zoom.us/meeting/register/tZMlde6grjwiHNDmsM6NA9y9ZlOBuWA8xa7O
