When is a Dementia Care Plan needed?
Noticing the signs of memory impairment can be frightening. It may begin with misplaced keys or forgetfulness, getting lost or repeating stories, or marked changes in behavior and judgment. Families often ask if these changes are a normal part of aging or whether something more serious is happening. If something more serious is going on, families may need to start thinking about making a dementia care plan.
The brain does change with age. For many, general forgetfulness, also known as Mild Cognitive Impairment, is a stage between normal cognitive changes during the aging process and the more serious decline of dementia. 
Some people live with Mild Cognitive Impairment for years without experiencing significant changes in behavior or impact on their ability to live independently. Others experience steeper cognitive decline that warrants dementia care planning.
Dementia generally affects those in their senior years. Researchers still are trying to determine who is susceptible to dementia and why. With Alzheimer’s disease, a person begins demonstrating changes in language, behavior, and decision making, and the disease progresses from there. With some other types of dementia, such as Parkinson’s disease, the person may never display symptoms of dementia, or Parkinson’s disease may be the cause of dementia. Vascular dementia may result from vascular disease in which one’s circulatory system is impaired, and as one would predict, impedes blood flow to the brain. A person could even have several types of dementia at the same time.
When dementia is suspected, it is best to consult a physician who specializes in geriatrics or neurology, in order to arrive at the most appropriate diagnosis. An examination called a geriatric psychiatric evaluation, along with brain imaging studies, can help determine the person’s specific diagnosis and deficiencies, so plans can be initiated for ongoing care.
Getting started with a Dementia Care Plan
Once a diagnosis has been determined, doctors likely will recommend that caregivers begin making a dementia care plan. The most common level of care for people with early to mid-stage dementia is a personal care setting, sometimes called assisted living. In Pennsylvania, this type of care is paid for with one’s private funds, as Medicare and Medicaid do not cover dementia care. Less common is a skilled nursing facility that offers dementia care; this is for late-stage dementia and, if private funds are depleted, one may qualify for a Medicaid stay.
Families and friends frequently ask “When is the right time to place my loved one in a memory care facility?” Memory Care Facilities offer services that are extremely beneficial to both the individual and their family and friends. Ideally, memory care facilities would like to welcome residents in earlier stages of their disease progression. This way staff can get to know the resident and the resident has a chance to adapt to their new home and choose and actively participate in activities, dining, social interaction, and other options available to them.
Don’t wait too long to seek care for your loved one. Generally, memory care facilities offer specialized care and activities such as crafts, trips, daily chores, sing-alongs, exercise, etc. A person unable to participate may be considered not appropriate for that level of care. At the same time, the person likely would be too well for skilled nursing, leaving the family without options. On the flip side, though, people with dementia who are placed in the early to middle stages of the disease are expected to decline during their stay and can therefore remain in place until they require a higher level of care such as skilled nursing.
As you visit facilities and see people who are in later stages of dementia, you may think, “My loved one isn’t that far into the disease.” It is important to note that those folks moved earlier in their disease progression, and you may be peering into the future for your loved one. It can be daunting to see, but it is prudent to recognize how the disease progresses and how a given facility administers care to residents of varying abilities.
Making Your Dementia Care Plan
Shortly after your loved one has been approved for a particular memory care center, a dementia care plan (or action plan) will be developed. Making a dementia care plan brings together an interdisciplinary team usually comprising the nurse, social worker, and activities professional. This team will meet with you and your loved one to assess his or her abilities, interests, and needs. Then they will create a plan of care encompassing physical, social, emotional, and spiritual goals specific to your loved one.
Recreational activities that will resonate with your loved one can be selected. For instance, sporting events may be exciting for one person whereas painting and drawing may appeal to another, and another may benefit from using a dementia activity board. A biography containing your loved one’s noteworthy experiences from early childhood years through present-day daily routine information will be helpful to the care team. Specifics such as nicknames, favorite places, special people, and the like will all be helpful in providing care. As a person progresses through dementia, he or she may mention a particular memory or person which could lead to an uplifting conversation, no matter how brief, and may brighten that person’s day. When the caregiving team is provided that level of insight, they can talk to the resident about familiar topics, which is much more likely to induce trust and security for the person with dementia – key components to a successful stay.
Communication is key in the relationship you and the memory care facility are embarking on together. You will want reassurance that all is going well, and your loved one will benefit from your involvement. Don’t be surprised, though, if at first your absence is requested; this is to help your loved one acclimate to the new environment and staff. As you can imagine, communication during this phase is especially vital. Feel free to touch base during this timeframe to learn how the adjustment is going; facilities are accustomed to the need for reassurance and should be supportive of you and your questions. Before long – usually a week or two – you will be welcomed to visit in conjunction with the facility’s visitation policy. It may be off-putting to think of leaving your loved one and not visiting, but the transition works remarkably well. Facility staff members realize that a great deal of trust is required during this period, and they work to make it as brief and stress-free as possible.
A person’s mobility – the ability to walk without assistance – may be a requirement for a dementia or memory care facility. Remember, the setting is usually one of social stimuli, and walking from one activity to another is an important component in the early to middle stages of dementia. The use of a walker is generally acceptable in this type of setting, but wheelchairs often require assistance and may or may not be approved as a condition of residency.
As dementia diseases progress, one’s ability to care for oneself in the bathroom becomes more of a challenge. Toileting, transferring in and out of the shower, and personal grooming are all everyday tasks for which a memory care team is available to assist. It is not uncommon to require incontinence supplies during a memory care stay – adult diapers, wipes, and gloves. These supplies are usually supplied by the family or can be provided by the community.
Most residents of memory care facilities need help with Activities of Daily Living (ADLs) which include bathing, dressing, toileting, medication management, and meal reminders. These services generally are included in the base rate. Most people with dementia start their stay in a memory care facility needing only these types of assistance. As a person progresses through dementia, though, they are likely to require a greater amount of care – help with cutting and eating food, for example – and so additional fees may be assigned; those with greater need will pay more because they require more of the staff members’ time.
The process of making a dementia care plan also will include a discussion of the person’s eating patterns. Later in dementia, eating patterns may start to change. Life skills that we take for granted often are lost in the later stages of dementia. Using a fork may become impossible; even understanding what a fork is may become a mystery. Finger foods are a common and dignified solution. Aside from or perhaps in concert with feeding oneself may be the loss of ability to chew properly and swallow. Soft-food diets, thickened liquids, and pureed foods may become the norm. Not all memory care facilities offer these late-stage dietary needs, and not all people with dementia require this level of care, so it’s important to ask whether this is available if needed.
Orientation skills often are one of the most noticeable losses for persons with dementia. As people progress through dementia, their thinking skills become more impaired. Early on in the illness, it is best to re-direct folks to help them maintain their focus, even if short lived. But as dementia progresses, redirecting isn’t enough and close supervision needs to take its place. Imagine yourself in complete and utter darkness, and someone tells you to find your way to the other side of an unfamiliar room. While it’s not quite like that with dementia, the feeling of helplessness and anxiety creep in quickly. You can either freeze or remain in place, or you start to walk and hope to find your way. This is similar with dementia, and it results in feeling increasingly lost; as a result, many people withdraw while others walk and walk. This sometimes results in a person wandering away from the house, getting lost, or even stepping into busy traffic – frightening prospects that can be easily avoided in a secure memory care facility.
Sometimes people with dementia can exhibit aggressive behaviors. Someone who had never before used foul language may employ colorful wording in expressing their underlying frustrations. Families may get a little chuckle out of moments like this and indeed they can be harmless, but when aggression turns physical, it can be surprising and confusing to the caregiver. Sometimes a conversation can defuse such a situation, but sometimes the psychosocial needs are greater and would be better addressed in a hospital’s behavioral unit. Behavioral units exist for all ages with some specializing in senior behavioral care. Medical professionals, including psychiatrists, work with your loved one’s physical chemistry to determine whether medications may be interacting in a way that induces aggression. Adjustments to medications are made, and the patient, then more at ease and comfortable, can return to his or her primary residence with the new medication regimen in place.
Caring for the Caregivers
Caring for the CaregiversAs you can imagine, or may already know, the needs of caregivers are often neglected. But, just as when you are on an airplane, it is wise to put on your own oxygen mask before helping others around you. That is much easier said than done, but if you can bring yourself to ask friends, neighbors, your local church, etc., you may have some volunteers at your fingertips. In addition, non-medical in-home caregivers can be hired for an hourly rate, usually requiring a minimum of a couple hours’ visit. You’ll be offered an array of services, and you select which ones will help you the most, for example, light housekeeping, laundry, or cooking. An in-home companion or aide could even visit with your loved one while you read a book, take a much-needed nap, or go grocery shopping. Then you can return all the more ready to be a good supporter. Self-care will pay dividends for you and your loved one.
No one plans to have dementia, but when dementia enters your world, making a dementia care plan becomes vitally important. More people are dealing with this disease than you may realize. Find a support network. Start by calling Pine Run Lakeview at 215-489-7117 or The Garden at Pine Run Health Center at 215-340-5267 to join our Alzheimer’s Support Group where you will receive information, guidance, and emotional support. Additional resources can be found online: