Caring for Family Members with Dementia: A Helpful Framework

The challenging role of care for dementia patients

Most of us know at least one person in daily life – maybe a friend, neighbor, or co-worker – who has been touched by Alzheimer's disease or related dementia. Indeed, a 2023 Seniorly study on dementia reports that the number of Americans with dementia is expected to more than double by 2060, making the issue of Alzheimer's and dementia care even more important than it is today.

What causes dementia, anyway?

Dementia is caused by abnormal brain changes that hinder communication with other brain cells. This can cause memory loss and problems with thought processes, the decision making process, emotions, and social abilities, as well as personality and behavior changes. Alzheimer’s disease is the most common form found in older adults who suffer from this disorder and according to the Alzheimer's Association, accounts for up to 80% of dementia diagnoses. As a person with dementia progresses, the individual becomes more dependent on others for assistance with daily activities, such as dressing and eating.

As dementia progresses, care options may change

If you have a family member who has received a dementia diagnosis, you may already be aware of the statistics and description – and they’re sure to hit close to home. More there are more than 11 million Americans are unpaid caregivers for a friend or family member with dementia. So if you've had a day (or days) where you feel like you're alone - you're definitely not.

There are a lot of unique challenges in caring for a loved one's dementia – and it can seem daunting at times. Over the course of the disease, people with dementia tend to need care around the clock as they become unable to properly self care for for themselves. When abilities have declined to this point, patients with demential will often move to a memory care community or nursing home where their needs can be met 24/7. For others, the cost of doing so may be prohibitive, or family members may simply opt to keep their loved one at home where everything is familiar.

For those in the early stages of dementia, hiring a professional in-home caregiver can be a good compromise. It’s more cost-effective than memory care and it can relieve some of the stress and pressures that dementia care puts on family and friends. 

Outside caregivers typically help with everyday tasks and activities of daily living (ADLs). These personal activities can include bathing, dressing, grooming, feeding, walking or moving about, transferring from bed to chair, toileting, and managing incontinence. The caregiver may also help out with instrumental activities of daily living (IADLs). The IADLs can range from household chores and preparing meals, to shopping, arranging for medical appointments, providing transportation, managing finances and legal affairs, and answering the telephone.

Options for in-home dementia care:

• A paid caregiver may actually live onsite to help with personal care and everyday tasks, and be available at all times of the day or night.
• A paid caregiver might come in only at night, allowing the other family members and caregiver to sleep without interruption.
• A paid caregiver might spend the day at your home – especially if the primary caregiver works outside the home during the day, or they may stop in once or twice a day to help with one or more ADLs.

Whether you choose to be the sole full-time caregiver or hire someone to help out, there are things you can do to help make dementia care easier for both you and your care recipient.

A dementia care framework for the caregiver journey

Dementia is a progressive disease, meaning that the needs of the dementia patient will change over time. The abilities and resilience of family caregivers are also likely to change, as they learn new skills and perhaps find themselves increasingly challenged with each new stage of the disease.It's important to create a framework for assessing how both parties are doing over time and to course. correct as needed. 

Here are the 6 things to regularly revisit over the course of your caregiver journey:

1. Information. Knowledge is power, and one of the best long-term strategies in caring for people with dementia is to become well informed about the disease and its progression. While Seniorly has created a great Definitive Guide for memory care, the Family Caregiver Alliance also hosts an incredible library of videos and webinars on caring for people with dementia, from bathing to dental care to making it through the holidays. The National Institute On Aging also provides Alzheimer’s and dementia-related information for patients, families, and caregivers.
2. Home safety. If you decide that the bulk of care will be provided in the home, it's time to address any home safety concerns that the environment may pose. Consider adding safety features such as a sturdy shower chair, grab bars in the bathroom, night lights, smoke detectors, CO2 detectors, or removing locks from doors so people with dementia don’t lock themselves in or out. There are many non-invasive options such as smart security systems that have security cameras and door-locking options right from smartphones. The security of the cameras can give seniors peace of mind about their safety and well-being when living with mild cognitive impairment (MCI) or the very early stages of dementia. The National Institute on Aging also has a great home safety features checklist that you can use to evaluate safety concerns.
3. Caregiver roles. The role of primary caregiver is a tough one, and even the best of us will want and need help. Think about ways to mitigate the risk of long-term burnout, such as engaging adult day care centers to regularly to provide socialization and stimulation for the person with dementia and a bit of a break for the primary caregiver. You can also consider ways to engage friends, family or professional caregivers to provide regular and reliable support. For example, how do you want to manage major health care decisions? Should you have a rotating schedule for care? Who will manage communication with the senior's medical team? It's helpful to ensure that everyone clearly understands the limits of what you can - and cannot do.
4. Care options. While care at home in the early stages of dementia may be feasible, you may still want to engage paid support from time to time, and the Family Caregiver Alliance is a great place to research the options in your area. As the disease progresses, managing troubling behavior or complex health care for people with dementia in a home setting simply may not be the right solution. Part of the caregiving journey will invariably include consideration of a long term care facility. If you think it might be time to find long-term care, there are resources to turn to for help in finding skilled nursing facilities or assisted living communities near you. Many caregivers report that memory care communities actually provide a higher level of health care than was being delivered at home, and a surprising number of caregivers share that they also benefitted from a return to their previous relationship dynamic.
5. Self-care strategy. Caring for people with dementia can be very exhausting and it's important to take some time for yourself to relax and recharge or it can take a toll on your own physical and mental health. Ask a friend or family member to help out once in a while so you get some important relief, join one of the many support groups available, or consider respite care. Whether directly providing care or managing care indirectly, family caregivers play and crucial role and their well-being is often overlooked.
6. Communication strategy. As the primary caregiver for your loved one, you will also undoubtedly assume the role of primary communicator, so your communication skills are going to be tested. Whether it be communicating with your care recipient, their medical team or just family members, how, what and when you communicate will be important. Think about starting a dementia journal to help you track changes in a person's personality and ability over time, and manage important information related to care.

Caring for someone with dementia is challenging - both physically and emotionally, so it's important to create a framework that allows you and other loved one's to constantly check in on how everyone is doing. Bringing extra support into the home environment or even moving to memory care may all have a time and place in your journey as caregiver. With each new stage comes a new set of challenges, but also the opportunity to re-evaluate the level of care for both the patient and the caregiver.