Supporting care partners of those living with dementia doesn’t have to be complicated.
Let’s begin with a reality check: for many of those living with dementia, the bulk of the care and attention has traditionally been delivered by informal caregivers such as families and friends. And that trend isn’t liable to change anytime soon, as the number of patients grows – and the importance of that role only increases. The follow up question is even more important: how do we best assist and empower informal care partners?
Supporting care partners of those living with dementia doesn’t have to be complicated. It also doesn’t need to be an all-or-nothing proposition. In this post, we address three key questions at the heart of creating a program to support dementia care partners:
Can starting small and building incrementally actually work?
What are informal care partners really looking for?
What do successful interventions look like?
There really are many tasks and activities that individuals can be involved in that offer them a chance to help make the holidays merry, while reminiscing about past gatherings. Don’t allow the day to end without everyone getting involved. We all like our opinion and preference asked, and who doesn’t want to be the best at something? Are you working with the best pie forked-edger? Find out, and be sure to ask for them to teach you and then to acknowledge them. This will definitely help you get on the “good list” and make an enjoyable holiday season with new traditions for all.
A labor of love. A unique challenge.
Far too often, caring for a person living with Alzheimer’s or one of the many other types of dementia can be a labor of love that most care partners are totally unprepared for. Even for seasoned care professionals, the procedures typically employed for other chronic conditions, such as medication adherence, health monitoring, and lifestyle changes, often don’t work – or bring mixed results.
In the case of dementia, the unique needs of this population have caused it to be among the most challenging, stressful, and costly chronic conditions to care for.
And while research points to the need for utilizing non-pharmacological interventions, it also underscores the importance of fully recognizing the needs of both the care partner and the person living with dementia.
But care requirements and intervention programs are notoriously complex. Care partners are often given enormous books to read, lengthy instructions to try and follow, and exhaustive lists of support groups to attend and websites to review. And while each of these have their merits, our experience has been that care partners are, more often than not, simply overwhelmed.
Studying, absorbing, and attempting to actually put into practice an entire care process – with an intricate and expanding to-do list – only adds to an already heightened state of stress – and typically, very few improvements.
Moving beyond an ideal world scenario.
We get it: in a best-case situation, experienced, professional care managers would be able to devote the necessary time to get to know the unique characteristics of the individuals living with dementia. They would also be able to establish an ongoing relationship with each family, building trust and learning about key indicators, including care partner readiness, support team availability, socioeconomic factors, and a host of other issues relevant to care plan development. But this isn’t always a reality for health care professionals, due to financial constraints, case load volume, and the lack of training and resources.
While those realities might lead you to believe that there’s very little that can be done to help these families better manage the stress, burden, and anxiety associated with the care process, here’s some good news.
Both peer reviewed literature and our own experience at AlzBetter show significant opportunities to make a meaningful impact without the need for rolling out complex, large-scale programs. Starting with smaller, bite-sized chunks of information delivered at the right time can be a very effective way to address care partner support.
Of course, a thorough assessment and care plan performed by a qualified professional should always be a priority. But starting small with simple and effective alternatives does offer an important additional option for care partners.
Rethinking interventions. Reducing frustration.
One study in the International Journal of Evidence-Based Healthcare reviewed 685 published articles concluded that there are five factors that can positively contribute to effective interventions. By incorporating these interventions, providing assistance can be fast and easy for care professionals to administer. This applies to care managers at health plans, physicians, occupational therapists, home care agencies, and all other health care professionals who have the opportunity to work with families affected by dementia.
Additionally, care partners often find information presented in this manner to be both usable and helpful — without being overwhelming — and the results produced have been meaningful and encouraging.
The five factors are:
Providing opportunities within the intervention for the person with dementia as well as the care partner to be involved.
Encouraging active participation in educational interventions for care partners.
Offering individualized programs rather than group sessions.
Providing information on an ongoing basis, with specific information about services and coaching regarding their new role.
Targeting the care recipient by reduction in behaviors.
Findings also show that support groups and other group type activities can also play an important role but should be included in the above interventions, as opposed to being the sole or primary source of support.
What are care partners really looking for?
In a study entitled “Getting what they need when they need it. Identifying barriers to information needs of family care partners to manage dementia-related behavioral symptoms,” researchers found that care partners have three critical information needs:
Timely access to information
Access to information that is tailored or specific to the care partner’s needs and contexts
Usable information that can directly inform how care partners manage behaviors
So what does an example of that look like in real life? One of our care managers recently performed a telephonic interview with the husband of a woman living with dementia. She was experiencing hallucinations and weakness, and rarely got out of bed. After asking about various lifestyle changes, we discovered that her fluid consumption was inadequate.
“She just says ‘no’ when I ask her if she’s thirsty,” her husband explained. But our care manager, armed with a toolbox of short, topic-specific videos, immediately sent him an email containing a link to a video on Eating and Drinking.
The information was timely and tailored to the situation, with strategies he was able to put into practice right away as he assisted his wife. This in turn, helped reduce his stress while making a marked improvement on his quality of life — and that of his wife.
Sounds promising — but does it actually work?
On the surface, this approach of providing the right information at the right time might seem basic to the point of oversimplification. But a study comparing an experimental group to a control group showed a 50% reduction in caregiver burden when appropriate education was made available to family care partners.
Care partners have many needs. In fact, it’s not uncommon to identify more than ten issues that they find extremely stressful during a single assessment. The key is to identify one or two areas where an intervention can be helpful – and is something the care partner is capable of accomplishing.
By limiting what you’re asking the care partner to do, you increase the chance of them actually taking the appropriate steps required.
This approach leaves the door wide open to revisit progress with the care partner. Follow-up visits can be more frequent, shorter in length, and offer interventions for behaviors not previously addressed. Additionally, the “follow-up more often” approach also works well due to the progressive nature of dementia and the ongoing changes which occur over time. What does a successful intervention look like? Based on our findings, we recommend a simple, yet effective four-part approach that utilizes multi-component interventions.
Training care professionals to develop a thorough understanding of dementia.
Fostering relationships, establishing ongoing trust, and gathering relevant information through the early and ongoing use of in-person, telephonic or video conferencing care management.
Providing tools to help identify and address care partner stresses.
Offering educational materials and support that’s both easy for care professionals to administer – and easy for care partners to utilize.
Starting small empowers care partners
When we start with small, achievable interventions, we can actually empower care partners and healthcare professionals to positively affect change while working within the constraints that may be imposed upon them. In the journey to find more win-win type situations in health care, small starts can have a huge impact in the way forward.