By Jette Hogenmiller and Nicole Brackett
In recent years, there has been far more awareness of the challenges affecting the millions coping with some form of dementia and the need to improve their quality of life. Thanks to the interest that visibility has created, new comprehensive memory and care approaches are being developed for people now living with dementia.
The number of people diagnosed with dementias, such as Alzheimer’s disease, is increasing every year. As it grows, there is more demand for services to support these people and their family members. According to the Alzheimer’s Association, of the more than 5 million people diagnosed with the disease in 2013, an estimated 800,000 live alone in their home.1 Home care is uniquely suited to help meet the needs of those with dementia and specialized, person-centered memory care provides vital benefits for these individuals and their families.
Memory care should contain five components — nutrition, physical exercise, sleep, cognitive training, and cognitive rehabilitation (figure 1) — implemented through focused interventions, with the goals of care centered on an individual’s needs. The five components aim to improve functioning and overall physical health, as well as brain health. When fully implemented, they have the potential to improve functioning and possibly even delay the progression of dementia. If a delay proves to be possible, even for a few years, this memory care approach could significantly decrease health care costs and improve the quality of life for millions.
Person-Centered Memory and Dementia Care
The Eden Alternative®, a nonprofit that provides education on improving the wellbeing of older adults in their communities, espouses 10 principles that guide a person-centered approach to care. According to these principles, “deeply knowing” an individual provides an opportunity to learn about their preferences for care.
Deeply knowing someone with dementia also allows care to be framed through their eyes. This person-centered approach bases decision-making on their desires and needs. This means that those who are providing supportive care respect a daily routine, as the client defines it, including waking and sleeping times, meal times, and dietary choices.
The goal of the Eden Alternative approach is to foster individual growth and dignity by building on personal strengths and current abilities, depending on a person’s stage of dementia. It is about recognizing that people can continue to contribute and grow despite declines in their ability to remember.
The person-centered plan of care must incorporate the key perspectives of the Eden Alternative principles: to support “wellbeing” and combat the plagues of “loneliness, helplessness and boredom” that often affect older adults. The plan should focus on wellbeing to enhance an individual’s sense of identity (validating self-value), connectedness (belonging), security (providing for safety), autonomy (self-determination), meaning (purpose), growth (opportunity to use their skills and passions), and joy (heartwarming experiences).
Seniors — especially those with dementia — experience increasing social isolation. In-home memory care strives to slow this progression by engaging patients in activities and joyful experiences that support wellbeing. For example, an older adult can celebrate their unique identity and create memories for their entire family by making a scrapbook depicting their life experiences and joys. Helping to plan and cook a meal for family members can be a source of joy for the grandmother who loved to cook for her family members and bring them together, but has recently been unable to do so. Caregivers who engage individuals affected by dementia based on the Eden Alternative principles can help their clients enjoy activities that were once integral to their identities in a new way. Memory care is about understanding what each person felt connected to in the past and making a link to what is important to that same person today.
Getting to know the different stages of an individual’s life will allow an in-home caregiver to develop a plan that will resonate with the person receiving care. For example, if an individual affected by dementia loved to garden in the past, creating a garden inside the home or outside in the yard can reconnect that individual with a passion and increase their sense of wellbeing.
Reconnecting an individual to old passions is a valuable element of memory care. It is also important to provide them with new experiences and help them discover new joys, such as listening and dancing to music or using art to express feelings they may have trouble putting in words. Whether new or old, joyful experiences are essential to maintaining emotional and physical health because they stimulate adrenal responses and decrease feelings of depression. Engagement in a variety of person-centered activities decreases the likelihood of wandering that is commonly associated with progressive dementia and believed to be related to an individual’s unmet needs.
A diagnosis of dementia can be devastating for the person and family receiving it. It is difficult to face the reality that physical and mental capabilities will progressively diminish. But collaboration with supportive home care dementia specialists can be a significant source of comfort. Confidence that the care plan will be guided by individuals who are experts in fostering independence and joy, as well as lessening negative behaviors and feelings (e.g., anger, wandering, loneliness, helplessness), can help to provide peace of mind. Embracing and incorporating the Eden Alternative principles into care approaches means care that respects and honors individuals — who they were in the past, who they are in the present and who they hope to be in the future.
Evaluation as a Guide to Dementia Care Interventions
In addition to wellbeing, another aspect of the evaluation is screening for cognitive impairment. The General Practitioner’s Assessment for Cognition (GPCOG)2 is the preferred tool to ascertain key information from the initial comprehensive evaluation that will influence the implementation of in-home dementia care services. Although designated for the “General Practitioner,” this is an easily performed screening that caregivers can administer with simple training. A caregiver can then communicate the results of the GPCOG evaluation to the primary health care provider in order to validate a baseline functioning to measure care outcomes.
Once an evaluation is completed, followed by baseline of cognitive functioning level, an Activities for Daily Living/Instrumental Activities for Daily Living (ADL/IADL) tool can serve to evaluate functionality, guide the required interventions, measure outcomes and provide for modifications to the memory care plan.
The ADL/IADL tool measures the ADL domains of ambulation, bathing, eating, dressing, grooming, and toileting. The tool also measures IADLs: ability to handle finances, food preparation, housekeeping, laundry, medications, shopping, use of the telephone and transportation. These resulting measurements are depicted in a graphical or numerical format with a score for each domain that a caregiver can then work from as they implement the care plan.
The scores for the various ADL/IADL domains inform interventions, which have the objective of working toward a higher level of functioning or stabilization for the client and limiting the decline in ability. In addition to providing a baseline for determining interventions, the ADL/IADL tool can guide adjustments to the plan of care throughout its course. For example, if a client becomes more reliant on ambulation assistance, this would indicate to an in-home caregiver a decline in an ADL domain that warrants a new approach and should be reported to the primary care provider.
The individual’s primary care provider or specialist can use the ADL/IADL score as an indication that the dose or type of medication(s) should be changed or, more significantly, that the person may have a more serious condition.
Five Components of Comprehensive, Person-centered Dementia Care
With the evaluation and ADL/IADL scores in hand, the person-centered care plan is created to address the five components of comprehensive dementia care: nutrition, physical exercise, sleep, cognitive training, and cognitive rehabilitation.
The first component of dementia care, nutrition, focuses on providing an anti-inflammatory diet that promotes good brain health. A care plan that incorporates the nutrition component calls for including in the individual’s diet healthy fats, shown to be necessary for cell membranes and brain function. Meals should be free from hydrogenated and partially hydrogenated fats that form trans fats and free radicals harmful to the body and brain. An in-home caregiver can use these guidelines to design meals and include the dementia patient in the meal preparation. A meal that consists of fresh local fruits and vegetables and contains an appropriate balance of carbohydrates, proteins, and fats is delicious and not boring.
When planning a nutritious menu, consideration should be given to buying “clean” fruits and vegetables, produce known to have a lower exposure to chemicals. Higher exposure to chemicals generally indicates that the produce contains more free radicals that, once introduced into a diet, require anti-oxidative foods to combat their ill effects. The average American eats a diet full of free radicals that may contribute to blood vessel damage. This damage may subsequently result in worsened blood flow to the brain and direct damage to brain cells. This type of damage, combined with a diet low in healthy fats, may accelerate the progression of dementia.
What is more, food is such a source of joy and tradition in most of families that creating nutritious meals with a loved one can enhance their wellbeing on many levels.
Physical exercise is critical to brain health. With “normal” aging, a reduction in the brain’s mass and volume size actually begins to occur in one’s 20’s. Additionally, blood flow to the brain, which is supplied through oxygen intake, diminishes with age. This decrease in blood flow is thus not surprising as we age and become less active. The brain needs approximately 20 percent of its oxygen breathed in. Physical exercise helps oxygen flow to the brain and can improve the quality of life for those with dementia.
The anti-inflammatory diet works synergistically with physical exercise to “feed” the brain. Safe and enjoyable exercise — even low-impact activities like walking or yoga — creates the opportunity for more oxygen flow to the brain, better brain health, and an improved mood.
Sleep has recently been shown to have an important effect on brain health. Most of us recognize that a good night’s sleep makes for less “brain fog,” and for persons with dementia, this fog can lead symptoms to worsen as the day progresses. Short, mid-day naps may help diminish this “sun-downing.” Sleep provides for body healing through cortisol activity as well as the actual “pruning” of pathways to increase functional and focused nerve communication. Seniors have challenges with sleep, so supportive “sleep hygiene” practices are especially important as part of the care plan.
Cognitive training, designed to reflect particular memory, attention or problem-solving functions, employs memory, attention and problem-solving exercises. Also referred to as “cognitive stimulation,” cognitive training involves memory activities, such as reviewing noun cards, practicing face and name recognition, and similar activities.3More research needs to be done in order to determine whether these activities can truly improve brain functioning. However, caregivers report anecdotal signs of a positive impact and some have demonstrated cognitive training can improve quality of life and wellbeing.
While there is no cure for dementia, cognitive rehabilitation has been shown to improve the functioning of those affected by the condition.5The word “rehabilitation” applies in this context as it similarly would in the case of an individual coping with a broken leg — we would find tools to get ourselves bathed, ambulate, travel to the grocery store, and so on by “working” around our disability so we can continue to live our lives.
Cognitive rehabilitation uses care approaches to address issues that most concern individuals, their families, and caregivers in everyday situations. The comprehensive evaluation provides a baseline for tailoring this approach to each individual’s needs. For example, if the client is now unable to prepare a meal in the way they are accustomed to, a caregiver can assist in developing a grocery list, creating menus, grouping meal items and similar activities to promote independence of meal preparation and self-esteem. Similarly, if an individual has challenges with use of the phone, a caretaker can create an autodial list alongside pictures and children’s names. When one has dementia, visual or word cues serve as cognitive connectors and can help “rehabilitate” or work around an impediment.
The ultimate goal of the person-centered care plan is to maximize the independence and self-esteem of the person with dementia, and to give families peace of mind as they strive to support the ones they love.
1. Alzheimer’s Association (2013). Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone, Facts and Figures. Retrieved at http://www.alz.org.
2. GPCOG Assessment (2013). Retrieved at http://www.gpcog.com.au.
3. Woods, B., Aquirre, E., Spector, A.E., & Orrell, M. (2012). Cognitive stimulation to improve cognitive functioning in people with dementia (Review). Cochrane Collaborative. Wiley.
4. Bahar-Fuchs A, Clare L, Woods B. (2013). Cognitive training and cognitive rehabilitation for mild to moderate Alzheimer’s disease and vascular dementia. Cochrane Database of Systematic Reviews 2013, Issue 6. Art. No.: CD003260. DOI: 10.1002/14651858.CD003260.pub2.