How to Care for Someone with Dementia or Alzheimer's Disease

Has your loved one recently misplaced their car keys? Had trouble with getting the right Wordle answer three days in a row? Don’t worry. It’s more than likely the result of normal aging – or maybe temporary stress or a heavy workload.

But if memory is on your mind, or if there’s a family history of Alzheimer’s disease or related dementia – a visit to your primary doctor can help you determine if dementia should be a cause for concern or recommend further testing. 

Start a dementia journal for family members

Whether they have a diagnosis or not, if you have serious concerns about a loved one’s memory, a dementia journal may be a friend moving forward. Maintaining a journal will help you keep track of any confusion or memory-related incidents, more easily observe patterns, and track changes over time. And as dementia progresses, this is also a great place for family members and loved ones to jot down notes from doctor’s appointments and observations about memory from friends, family, and co-workers. Sound daunting? No worries! You don’t need to write in it every day – just when there is something new or important to note. 

Initially, a journal will help you record any warning signs or progression concerning memory issues. Worsening symptoms will alert you that it’s important to see your primary care provider. And these notes will be extremely valuable in documenting - and communicating - concrete changes. That’s especially important as backup when your loved one happens to be having a “good day” in terms of memory while at the doctor’s office.

Plus, if you’re supporting a loved with dementia daily, it’s easy to miss subtle progressive changes. A journal helps you to see such changes more clearly - empowering you to support your loved one better.

As memory and cognitive abilities decline, comparing your notes detailing your loved one’s symptoms with the 7 Stages of Dementia Chart (below) can help both you see where they are in the disease progression.

6 categories to track in your dementia journal

While each person will likely have their own way of setting up their journal, there are a few categories that will be important to track

• Managing everyday tasks: How is the patient managing activities of living like getting dressed, showering or mobility? How is their level of personal care? As the disease progresses, people with dementia may have added challenges with activities of daily living.
• Mood & behavior: Take note of particular times of day that anxiety, stress or communication skills seem to be more challenging. Are you seeing any evidence of Sundowner's Syndrome? What about food-related mood swings?
• Eating & nutrition: Depending on the stage of dementia (don't worry, we'll review that next), patients may have difficulty with eating or getting nutritious foods. Monitoring meals and hydration will help you better identify what's working well, what to avoid and when to serve meals. And if your loved one is having challenges with swallowing or chewing, we've got a great roundup of soft food recipes.
• Toileting: Incontinence and difficulty with toileting is a common problem as dementia progresses, and understanding how accidents happen may help you better plan to avoid them.  Recording details may also help you determine which cleanup strategies work best (as not all incontinence accidents can be avoided). 
• Safety concerns: Many dementia patients exhibit wandering tendencies, and keeping your family member safe is at the top of the priority list. If you start to notice that wandering or leaving the premises is happening more frequently, it's a sure sign to reconsider memory care options that may have more robust safety features.
• Medical appointment notes: Ever walked out of a doctor's appointment feeling more confused than when you went in? It's a common experience we hear in support groups all the time, and taking notes during medical appointments can help you clearly identify what was covered, remember next steps and schedule follow-up appointments. It can also greatly aide in what we call "stakeholder communication" - the information that often needs to be shared with family members and loved ones about health care concerns.
• Caregiver notes: Time and time again, we see caregivers focus on the challenge at hand instead of themselves. While this is unavoidable to some extent, it's helpful to give yourself a quick "stress rating" at the end of the day- just use a scale from 1-10. When you start to see the numbers regularly hovering at the higher end of the spectrum, that's a sure sign that you need to take a step back and focus on self-care. For some, this might mean calling in support, for others it might mean taking a day or two off, and for others it may be acknowledging that the level of care has surpassed your abilities, and that both you and your loved one might benefit from a more structured approach to care.

The 7 stages of dementia

So now that you've got a great tool for monitoring changes over time, it's equally important to understand the stages of dementia so you can put those changes in context. When visiting your doctor, it may be helpful to confirm the current stage so you can set expectations for each family member and yourself) about the changing dynamic.

Developed by Dr. Barry Reisberg, the 7 Stages of Dementia are often measured by the Global Deterioration Scale (GDS).

11 Resources for dementia care, help and support

Whether you are the primary caregiver for a dementia patient or managing and coordinating dementia care through others, there's a lot to consider and even more to learn. In the early stages, outside assistance may not be necessary. But knowledge of the disease along with emotional and practical advice and support can be monumental. No matter how much you love someone, caregiving can be hard work – and there may come a time when you need caregiving help. This list will help you choose possible and appropriate care options at every level. (Note – applicable stages are an just estimate and may vary from person to person).

Dementia hotlines (any stage)

Need advice about a loved one’s dementia and care? The Alzheimer’s Association has a great national helpline (800-272-3900). They can recommend support organizations and other resources in your area. Other local resources might include an aging and disability center or area senior centers. Also check with your local hospital or clinic, primary doctor, neurologist, gerontologist or even a spiritual leader for information and assistance.

 Dementia support group (any stage)

Check with your doctor, local council on aging, or the Alzheimer’s Association for Dementia and/or caregiver support groups. These can be invaluable for caregivers to share experiences and provide support for each other. Groups for those with the disease are often geared to those in early stages. Gathering with others going through the same thing can be helpful emotionally. Sometimes group meetings are planned with a nearby room offering arts and crafts, exercises, or music therapy for the person with dementia.

Memory café (early to mid-stages)

The Alzheimer’s Association and other local organizations offer memory cafés as a way for those living with dementia and their caregivers to gather in a social, non-judgmental environment. It allows patients to be out and about and lets them continue to be socially involved as long as possible.

Geriatric care manager (stage 4 and beyond)

Care managers are not one size fits all – but most can adapt to your needs. Some will visit a client every day. Some check in daily but visit only as requested. Others just provide help on an as-needed basis, such as appointment-accompaniment, help with bills, clutter clean-up, etc. There is no national care manager registry, but most are trained professionals such as social workers or nurses. The Alzheimer’s Association can usually provide a list of care managers in your area. Ask questions regarding their education, experience, availability and ability to handle your specific needs. Be sure to ask for references as well – and check them!

Aide/companion (stage 3 and beyond)

An aide or companion can be a good support option for family caregivers or care managers. They can fill in when a family caregiver has to be away (or needs a break). They can also be a less expensive option for some of a care manager’s more basic (less skilled) tasks. They may perform household tasks, or simply provide companionship. Often a care manager, local organization, or even word of mouth, can help your find someone reliable.

Unpaid family caregiving (any stage, but self care generally needed at 4 or beyond)

Family caregivers can refer to a spouse, partner, child, or other relative or friend that provides in-home caregiving at no charge. Typically they would be live-in help, but could include unpaid help that comes in during the day (or night) when a primary caregiver is working (or sleeping).

Paid in-home in home caregiving (stage 4 or 5 and beyond)

Paid caregivers may live-in or come daily – or on some other regular schedule. They generally provide assistance with activities of daily living as well as household tasks, companionship, and the like.

Assisted living (varies by person living physical and cognitive abilities)

Assisted living is a good choice for someone that can no longer live alone, but can still do many things for themselves and is at no risk of wandering. This setting will provide socialization, activities, and food. Many times, an aide or caregiver can come in (at an additional cost) to provide additional care if needed. This is not an option for those in later stages of dementia or who may be at risk of wandering.

Memory care community (typically dementia care stage 5 and beyond)

Similar to assisted living, memory care communities may be stand-alone or part of a larger continuum of care. Usually a locked unit (to prevent wandering), food, activities, assistance with ADLs and all housekeeping is provided). This is a safe and enriching environment for those living with dementia. But as communities differ in quality, resident and employee turnover, and cost, be sure to research several before choosing the right fit for your loved one.

Skilled nursing (stage 6 and beyond)

Sometimes called nursing homes, this type of care would be appropriate for someone in the late stages of dementia, who is mostly non-verbal, sleeps a lot, and needs help with all activities of daily living. It may also be an option for someone in earlier stages who needs assistance but finds memory care too expensive – as many skilled nursing facilities accept patients on Medicaid. And as a person's personality changes over time and their ability to communicate is diminished, engaging professionals adept in spotting medical and other issues may be the preferred route. However, skilled nursing facilities tend to focus on short-term support and a long-term stay may not be possible.

Hospice (stage 6 and beyond)

You may be surprised to learn that hospice is available to help out someone in the later stages of dementia if they meet certain criteria. Whether at home or in a memory care community, their team, including a nurse, social worker, chaplain and certified nursing assistant (CNA), is invaluable. They add an extra element of support – and resources – for the patient, family, and community staff. The National Association for Home Care & Hospice and National Hospice and Palliative Care Organization are two great resources for families considering hospice care.