Caring for an older adult with kidney disease
About 40% of Americans over the age of 60 have chronic kidney disease. This article describes the nature, common causes, and consequences of kidney disease. It then describes some of the main caregiving tasks specific to looking after an older adult with kidney disease.
Caregiving and kidney disease
About 40% of Americans over the age of 60 have chronic kidney disease (CKD).1 This means that their kidneys are less able to filter toxins from the blood, regulate body chemistry and blood pressure, and help maintain bone health. Common causes of kidney disease are high blood pressure, diabetes,2 obesity,3 smoking, and drinking alcohol.4 There is no cure for chronic kidney disease even in its earliest stages.5
Caring for an older adult with kidney disease puts an unusual burden on caregivers due to the treatments required. Caregivers taking care of people with kidney disease may need to help with dialysis and after-care, manage medication, encourage exercise, monitor diet, give emotional support, and manage their own mental health.
Helping with dialysis and after-care
Caring for an older adult with kidney disease often involves helping them through dialysis treatments and managing their recovery after each session. Dialysis is a process where a special filter replaces the work of the kidneys by cleaning the person’s blood. It can be done at a dialysis center or at home.
There are two main types of dialysis: hemodialysis and peritoneal dialysis. Typical hemodialysis sessions, either in-center or at-home, take three to four hours and need to be done three times a week, but many people receive dialysis more often than this, and even daily for peritoneal dialysis.6 The sessions are not painful, and the person receiving dialysis can do sedentary activities such as reading, playing board games, talking to their caregiver, eating a meal, or sleeping. The person may feel dizzy or sick after the session.
If a person decides to have home dialysis, they and their caregiver will receive extensive training in the process, resulting in a certificate in home dialyzing. Training can take between several weeks and several months (average is between 4 and 8 weeks).7 It is usually conducted by a home training nurse, either at a dialysis facility or in the home. The training includes:
- How to set up and use the equipment
- How to insert needles into the person’s access points (many people on dialysis learn and prefer to do this themselves)
- How to fill out the “run log” for each session with information such as weight, blood pressure, and temperature
- How to disinfect the machine after each session8
Follow-up care includes watching for signs of side effects and complications, such as fatigue, low blood pressure, depression, sepsis (a life-threatening complication of infection), and muscle cramps.9
Medication is a key part of treating kidney disease. It can include medicines that help the body get rid of salt and water, lower blood pressure, and regulate cholesterol levels. The fatigue and “brain fog” that can result from treatment can lead the person to forget their medications, so it’s important for the caregiver to set up a well-organized pill-taking regimen.
People with kidney disease receive many benefits from exercising and being active, including improved muscle function, lower blood pressure, and higher quality of life.10 However, the disease and its treatment can cause low energy and extreme fatigue.
The caregiver can help by scheduling exercise activities for the person at least three times a week for 30 minutes or more each session. Activities where the person moves large muscle groups continuously, such as walking, swimming, or dancing, are suggested as the most beneficial for people with kidney disease.11
Kidney disease makes the body less able to flush out salt and waste products. Therefore, people with the disease need to follow a diet that is low in sodium (salt), potassium, phosphorous, protein, and other elements handled by the kidneys.12
Some foods to aim for are:
- Non-citrus fruits
- Most vegetables
- White breads and pasta
- Corn and rice cereals
- Non-citrus juices such as apple and cranberry
Among the foods to minimize because of their salt, potassium, phosphorous, or protein content are:
- Meat (all kinds)
- Dairy (all kinds)
- Beans, peas, and legumes (all kinds)
- Citrus fruits
- Vegetables from the nightshade family, such as potatoes and tomatoes
- Nuts and seeds
- Whole-wheat breads and pasta
- Dark-colored sodas that have added phosphorous
The person will need to limit their fluid intake significantly to about 2 to 3 pints of fluid (4 to 6 cups) a day, so that the dialysis machine can handle the amount of fluid in the person’s blood.13 And it is important for the person receiving care to only take vitamins, supplements, or over-the-counter medications if approved or recommended by their provider.
Caregivers can help by making home-cooked meals, which allows them to control the amount of salt, protein, and other undesirable elements.
Giving emotional support
People with kidney disease have much higher rates of distress, depression, and anxiety than people in the general population, in part because of physical changes caused by dialysis such as raised levels of inflammatory cytokines, and in part because of the significant life changes caused by having the disease.14 However, symptoms of depression and kidney failure often look the same, so the caregiver should ask for a medical professional’s diagnosis if they see potential signs of depression such as sleep problems, poor appetite, apathy, headaches, and mood swings.
Since much of the distress and depression associated with kidney disease come from feeling powerless and overly dependent on dialysis,15 caregivers can help people by organizing ways for them to feel more in control of their lives. These can include doing tasks that are easy to complete or managing health goals such as going for regular walks or attending medical appointments.
Another form of emotional support is to help the person sign up for a peer-support group for people with kidney disease. For example, The National Kidney Foundation Peers program connects people who have advanced kidney disease with a peer mentor who can share their experience and provide understanding and support.
Managing one’s own mental health
Caring for someone with kidney disease significantly increases a caregiver’s burden16 and may lead to caregiver stress syndrome, burnout, depression,17 and lowered quality of life.18 Those looking after people with kidney disease should pay close attention to their own mental health and take action if they are feeling stressed or depressed. Using the Burden Scale for Family Caregivers (BSFC) can help the caregiver monitor and manage their emotional health.
Balance care responsibilities
Caring for an older adult with depression
Coordinate appointments, care, and follow up
Create a care plan
Deal with caregiver burnout
Deal with caregiver depression
Join a caregiver community
Keep track of medical records
Manage providers and therapies
Maintain medical equipment
External supporting content
1The challenge for the caregiver of the patient with chronic kidney disease. Nephrology Dialysis Transplantation (NDT).
2Kidney failure (ESRD) – Symptoms, causes and treatment options. American Kidney Fund.
3Obesity and Kidney Disease. Canadian Journal of Kidney Health and Disease.
4The association of alcohol and smoking with CKD in a Japanese nationwide cross-sectional survey. Hypertension Research. Drinking Alcohol Affects Your Kidneys. Kidney.org.
5Treatment: Chronic kidney disease. NHS.
6Home Hemodialysis. National Kidney Foundation.
7Home Hemodialysis. National Kidney Foundation.
8A Brief Overview of Home Hemodialysis. DaVita Kidney Care.
9Side effects: Dialysis. NHS.
10Physical activity for people with chronic kidney disease: an international survey of nephrologist practice patterns and research priorities. BMJ.
11Staying Fit with Kidney Disease. National Kidney Foundation.
12Kidney failure (ESRD) – Symptoms, causes and treatment options. American Kidney Fund.
13How it’s performed: Dialysis. NHS.
14Emotional distress and adjustment in patients with end-stage kidney disease. PLoS One.
15Depression in people living with kidney disease. American Kidney Fund.
16The challenge for the caregiver of the patient with chronic kidney disease. Nephrology Dialysis Transplantation (NDT).
17The Renal Caregiver Burden Scale: Phase One. Kidney.org.
18Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care. BMC Nephrology.