Change is rarely easy in life. Adding the complications of Alzheimer’s disease and related cognitive impairment into the mix can leave care-partners clinging to the status quo in the hopes of avoiding a catastrophe. However, inaction can have its own negative consequences, as well as missed opportunities for moments of joy and connection.
In this post, we’ll explore techniques for introducing changes in care and environment to an individual living with neurocognitive disorder in a way that can minimize stress and maximize positive outcomes for all involved. These suggestions are time-tested as well as evidence-based, and we hope they’ll serve you well in your next moment of transition.
This is one of the most important questions to address. When a person living with cognitive change does not want or have insight into the need for support, introducing change can take creativity. While it may seem difficult or even impossible, evidence and experience suggest that when transitions occur, involving the individual living with cognitive change in the decision-making process and planning is important to a successful long-term outcome. Here are some tips for involving an individual living with cognitive change in decisions:
Think about this independently at first. Ask what matters most to you and to the person living with cognitive change, and jot down some notes to refer back to. Is it safety? Quality of life for one or both of you? Socialization? Control? For the person living with cognitive change, if it’s “staying in my home,” dig deeper. What is it about home that matters most? Familiar items? People? Routines?
Understanding your motivation for adding support, as well as what the person living with cognitive change’s goals are, is important in framing why help is being added and how it should be added. People living with cognitive change may experience diminished insight or ability to empathize, so pointing out deficits and how they’re affecting you will often not have a good result. Instead, keep the conversation positive and oriented toward how support will meet their goals. For instance, “I know you are strong and you have so much to offer. Getting out with your new assistant and volunteering will help you maintain your independence.” “Being in a community will give us less time to worry about chores and more time to be _________ and ________ again. Wouldn’t it be nice to focus on having fun together?”
Your emotions surrounding change are valid, and so are the emotions of the person living with cognitive change. Some individuals respond to change by embracing it, but many have a natural resistance to the unknown. This doesn’t change with dementia. While it can be difficult to hear painful emotions like anger, fear and grief from the individual living with cognitive change, it’s important not to dismiss or suppress them.
Instead, let your friend or family member know you hear them and care with statements like, “I know this is hard and you’re angry. I don’t blame you for feeling this way. I’m angry at the situation too.” The feelings may persist, but they will often diminish in intensity over time. If you are in a space where you feel unable to validate the tough emotions that come with real loss, consider enlisting the help of another person to support the conversation(s), like a geriatric care manager, social worker, minister or other professional skilled in supportive counseling and motivating change. Burnout can make it difficult to tackle what already takes significant skill. Sometimes, depression and anxiety present as irritability and aggression, so involving a professional may help get to the root cause of the resistance – and a solution – faster.
Support the person living with cognitive change through their memory loss by encouraging them to use pictures and note-taking to fill the gaps in short term memory. Taking photos, notes, videos and even recording responses during meetings with potential home care team members or tours of residential care settings can help a person living with cognitive change feel confident in their involvement and decision-making, and can also diminish the fear of the “unknown.” It’s much easier to welcome a personal assistant when you have seen their face and know their name and a bit about them!
Living with cognitive change and relying on others for support can whittle away a spouse, parent or friend’s voice and feelings of control. This can result in resentment. Using controlled choice can give back some of the autonomy and dignity an individual desires, while still keeping you in the “driver’s seat.” As mentioned, involvement in the decision-making process by the person living with cognitive change is ideal.
However, that can happen in many ways. If “big-ticket” items like whether to move or add care are overwhelming, try creating choice around smaller ones. Here are a few examples: “Would you rather have _________ start at 9 or 10am?” “Would you rather try a one-bedroom at ABC Assisted Living or a studio?” “Did you like Stacy best, or Anna?” Remember – incorporate visual cues like pictures and notes to support memory! This technique can be carried throughout a transition (for instance, once in the new apartment, “Should we hang this picture on the wall, or that one?”). When major changes occur, having control over what may seem like minor details can serve as an important anchor, diminishing apathy and depression.
As mentioned, it’s never too early to plan ahead; life can be unpredictable with or without a dementia-causing illness! How will you know when to add more support? If a person living with cognitive change complains of being lonely, lacks cognitive or physical stimulation, experiences an episode of becoming lost, or struggles to keep track of health needs, it may be time to add help.
There are many home-based supports and community settings out there to explore. For some, gradually adding assistance over time can bolster greater acceptance and, ultimately, safety. For others, the transition of home care team members coming and going is more disruptive, and it’s best to move toward live-in support or a residential setting quickly. In both cases, tailoring when you share the information is a best practice. Doing so too far in advance can result in anxiety. Doing so too late can result in panic and resentment. Preparing a person living with cognitive change in moderate stages a few days in advance, with additional support and supervision pre-arranged over that time frame, is often a good rule of thumb.
To ease the stress of the transition, consider ways to create continuity. For instance, whenever a new team member comes on board, share a detailed copy of your routine with the person living with cognitive change, create access to activities supplies, foods and other sources of pleasure and joy the person has enjoyed traditionally, and establish rituals with the person living with cognitive change to ease anxiety. Some examples may include a set time for a daily phone call or weekly date with a visual reminder. These strategies tap into procedural learning, a type of learning that individuals living with cognitive change often maintain access to and benefit from.
Like any great endeavor – partnering for care to support a person living with cognitive change can be a joy – and a challenge. It’s important to recognize that it takes a proverbial “village” to make it through what can be a long and sometimes daunting journey. Loneliness serves no one. Reaching out and connecting with others – whether by consulting professionals in the field of aging, speaking with a psychotherapist, joining a group of other informal carers who’ve “been there,” or checking out a Wednesday night bowling league – can go a long way toward helping you feel seen in your role, restoring your energy, giving you fresh perspective, and finding tried and true resources. Having a healthy, optimistic support person is one of the biggest protective factors out there for people living with cognitive change, so investing in yourself (and your leisure time), should never be up for debate!
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