Caregivers are wise to observe the scout’s motto: “be prepared” as they embark on the journey of full-time care of a loved one. There are important considerations when caring for a parent with dementia at home.
First and foremost, you must educate yourself, the parent with the dementia diagnosis, as well as other immediate family or close friends so everyone knows what to expect as the condition progresses.
Then, it’s essential to create a home environment that is secure, accessible, and designed to support the behavioral and physical changes associated with dementia to protect the safety of your loved one.
Finally, you will need to have support options in place to avoid caregiver burnout. This will allow you to continue participating in some semblance of your normal life, especially when it comes to things like your own medical appointments, spiritual/religious traditions, and social connection with family, friends, and any groups you are part of.
We’ll cover each of these considerations in order – along with tips on caring for a parent with dementia at home – to guide you along the way.
1. Dementia Education & Information
Dementia is a progressive condition. The sooner you, your parent (assuming the diagnosis comes early enough), and the extended family can begin planning – the better. Creating a long-term plan based on current dementia research and findings will help you to greet each successive stage with greater awareness, courage, and a sound grasp of the care required.
Reliable sources for information about dementia
Here are some links worth bookmarking, each of which offers high-quality and vetted information about dementia, Alzheimer’s, and support opportunities in your area.
- Boston Resource Guide for Dementia
- Alzheimer’s.org: What is Dementia?
- National Institute on Aging: What is Dementia? Symptoms, Types & Diagnosis
These resources will help you to learn more about the behavioral changes, physical/cognitive changes, and the evolving nature of caregiving from the early to more progressed stages of the disease.
While your parent’s physician is a trusted resource, the above links can answer questions or re-acquaint you with information at the touch of your fingertips or in the wee hours of the morning.
Creating a financial plan
In the beginning, your parent may only need a modicum of care, supervision, or support and that doesn’t cost much. Over time, however, increasing care needs will require financial resources.
Our post, How to Pay for In-Home Care, is an excellent place to start. We also recommend scheduling an appointment with a financial advisor to review your specific options.
2. Making the Home (& Family) Secure, Accessible, and Supportive
The combination of both physical, mental, and emotional changes inherent with progressive dementia require adjustments in the home – and in the mindset of caregivers and immediate family members.
Here are some things to think about and plan for:
Physical accessibility/safety in the home
The more safe and accessible the home is, the safer your parent will be. These modifications include everything from mobility and lighting changes, to bathroom/kitchen safety, minimizing trip hazards, motion/fall/exit alarms to monitor potential wandering, clearly labeling cabinets/drawers/safety resources, etc.
We recommend reading an excellent post from the Fisher Center for Alzheimer’s Research, Home Modifications, that are specific to patients with Alzheimer’s.
Prepare for the common progressive symptoms
Preparing the home prepares your mindset for the common and inevitable progressive symptoms and side effects of Alzheimer’s, which include:
- Sundowning/sleeplessness. Becoming more irritable once the sun sets. This is often supported by using healthy daylighting during the day, and low-lighting at night to support the circadian rhythm. Physical activity/exercise during the day, as well as walks or gardening in the sunshine, can also help.
- Wandering. Smart security systems are a great help to ensure someone is alerted if a door is opened when nobody is watching, catching the wanderer before s/he gets lost or hurt.
- Bathing, toileting, and daily hygiene. Eventually, your parent will no longer remember to bathe or change his/her clothes/pajamas. Bathing/showering requires accessible chairs and human support, and incontinence will necessitate a plan to keep your parent clean, dry, and dignified.
- Nutrition/medication information. Healthy lifestyle choices and customized medication routines can notably slow down the progression of Alzheimer’s and minimize some of its challenging effects.
Provide safe transportation alternatives
Those with early stages of dementia enjoy a certain amount of freedom, but driving is not an option. Instead, professional senior transportation services are the best way to get your parent to-and-from their scheduled activities when family members or close friends are unable to drive them.
These services can be contracted in four-hour minimums, and as little as once a week, or a few times a month, offering a sense of autonomy and independence without sacrificing safety.
3. Professional Senior Care & Support Services
Caring for a parent with dementia at home full-time is incredibly demanding. As a result, you need to enlist outside support of some kind. While this can be in the form of volunteer shifts from family and friends, it is best to research and line-up professional caregiving support in case you need it.
Read, Types of Home Care…, for more details, which includes information about:
- Respite care. Provides a break and prevents burnout for primary caregivers and also allows caregivers to attend important family functions, social events, vacations, weekends away, etc.
- Adult daycare. An excellent option for respite care, who are working, for daytime flexibility, and to support those in the sandwich generation who are also working and/or have children living at home.
- Professional home care. You can schedule part or full-time help with a professional senior home care provider. It starts with a free assessment, and care plan that accommodates your needs today, tomorrow, and down the road.
4. Involve the Entire Family
Make sure to conduct family meetings to get your other siblings or close relatives on board. This is one of the best ways to sensitively manage the stages of aging. Having a holistic family approach to your parent’s care plan minimizes future conflicts and stresses.
It’s important that any siblings and other immediate family members understand the energetic and emotional stamina and finances required to care for a parent at home. Monthly or quarterly meetings keep everyone up-to-date on how things are progressing and enable the opportunity to reevaluate the existing care plan as needed.
Consider creating a caregiving schedule to help alleviate the burden on a single caregiver. If the family is scattered about, find weekends or weeks that siblings, cousins, or adult grandchildren may be able to provide respite care throughout the year.
These family caregiving meetings allow you to hear what your parent’s preferences are while s/he still has a cognizant voice. You can also compare local home care agencies, discuss financial plans, and review the cost of in-home dementia. Compare costs with residential care options to make the best choice for your parent and your family.