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Social relationships and risk of dementia

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Fractured picture of older manDementia is a group of symptoms that can have a number of causes. Alzheimer’s Disease is the most common.  The symptoms include difficulties with memory, language, problem solving, and other cognitive skills that make it progressively more difficult for the person to take care of everyday tasks.

In 2017, 5.5 million Americans were living with Alzheimer’s Disease and there were approximately 480,000 new cases in adults aged 65 and older. This is expected to double by 2050 as more people reach age 65. (For everything you want to know about Alzheimer’s, the Alzhiemer’s Association is the place to go).

There’s no cure for dementia at this point and the medications available to treat the symptoms are not always that effective. So our best bet right now is to try and prevent and delay its onset. While there can be a genetic component, especially for particular forms of early onset dementia, there are some risk factors that we can modify – most notably cardiovascular disease.  (Yup – eating healthy and getting plenty of exercise. We know we need to do it.)

Social engagement is also thought to help, although the research on this is more limited.

What does social engagement mean?

But what does that mean exactly – social engagement?  I am an introvert and I’m pretty happy spending whole days not talking to anyone but Husband and The Quadrupeds. Does that mean I’m at risk? Should I be forcing myself to go out and interact with people just like I lever myself off the couch and go to the gym?

I recently came across an article by Jisca Kuiper and colleagues at the University of Groningen in The Netherlands that helps pull this apart a little bit.

First, the concepts of social engagement or social relationships encompass a variety of things.  There’s the structure of your social network – at its most basic the number of people you have connections to.  There’s also the more qualitative component which is how you interact with those people.  In this study, Kuiper and colleagues categorized social relationships as:

  • The size of your social network
  • Participation in community activities
  • How often you interact with friends or family
  • Whether or not you feel lonely
  • How satisfied you are with your interactions with others
  • And others things like how reciprocal you feel your interactions are (i.e., how much support you give to others and how much support they give back to you)

They used a meta-analysis to look at the relationship between these different aspects of social relationships and incident dementia in the general population.

A Slight Detour:  Meta-analysisDetour sign

Science is a cumulative process.  We take what we learn from one scientific study and we add it to what we learned from a previous study and the next study adds on to what we learned and so on so that over time we build up a base of evidence around a set of research questions.  Of course, in reality it’s messier than that because (among other things) studies can contradict each other. Half the fun is digging in and figuring out why.  Systematic reviews (of which meta-analyses are a subset) are a way to gather data from a group of similar individual studies and identify the patterns of results.  Meta-analysis is a type of systematic review that lets us statistically pool the results of a group of similar studies.

As with all scientific studies there are procedures that guide meta-analysis including how studies are identified, the criteria used to include or exclude particular studies, which measures are used from those studies, and how data from those studies will be combined. (If you really want to geek out on the details you can take a look at the Cochrane Handbook for Systematic Reviews of Intervention).

Back to our originally scheduled program

Kuiper and colleagues reviewed the titles and abstracts of 8,528 articles (crikey!) and from that identified 133 full articles to look at more closely.  Out of those 133 they identified 15 articles that met their inclusion criteria and identified another 4 from reference lists for a total of 19.  These articles reported on the association between social relationships measured at some baseline time point and incident dementia at a second follow-up time point using nationally representative data.  That means they weren’t looking at the effects of an intervention just at the way social relationships at time 1 were associated with onset of dementia at time 2 based on data that allows them to generalize the findings to a national population.

Here, in a nutshell, is what they found:

  • Social network size –not able to make any conclusions because there was too much variability across studies that included this measure
  • Social participation – those with less social participation had a higher risk of developing dementia
  • Frequency of social contact – those with less frequent social contact had a higher risk of developing dementia
  • Loneliness – those who were lonely had a higher risk of developing dementia
  • Satisfaction with social network – no significant relationship between low satisfaction and developing dementia

In addition, the strength of the associations were comparable to other well-established risk factors such as depression, physical inactivity, midlife hypertension, low education attainment, type 2 diabetes, and smoking.

Why might social participation, frequency of social contact, and loneliness show these relationships?

Kuiper and colleagues suggest a few theories.

  • Just like our muscles, you need to use it or lose it. Social interaction stimulates the brain and keeps it working.
  • The cognitive reserve theory suggests that social interaction actually affects the structure of the brain in a way that helps it use its networks more efficiently.
  • We know that stress increases the risk of Alzheimer’s Disease through structural changes in the hippocampus. Social support and can work as a buffer against the effects of stress.
  • The social environment (of which our social network is a part) can influence our health behaviors (positively and negatively) and facilitate (or inhibit) our use of health care which in turn can influence our risk of developing dementia.

So really the bottom line – eat healthy, get plenty of exercise, and don’t isolate ourselves.  (And this introvert would like to remind you that your isolation might be my happy quiet time).

As always, I’m happy to hear your thoughts about what you read here.  Let me know if there are topics you’d like me to cover or questions you’d like me to consider.

Resilience and caring for someone with dementia

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Creative commons license miz_ginevera https://www.flickr.com/photos/ginevra/4603670503

Creative commons license miz_ginevera https://www.flickr.com/photos/ginevra/4603670503

Resilience is the ability to bounce back from a tough situation.  Most of us are pretty resilient. That doesn’t mean we don’t experience stress, sadness, anxiety and a host of other emotions when something bad happens, but over time we adapt.  This is particularly important when we’re faced with a situation that will continue for some time, such as caring for a loved one with dementia.

Someone is resilient if they show no obvious sign of distress in the face of a significant challenge (such as caregiving); continue to actively engage in life; and see their life as positive, full of meaning, and satisfaction.

The good news is that resilience is something that we can learn and foster in ourselves and others.  This is one takeaway from a recent article in Aging & Mental Health that examines resilience in individuals caring for a spouse with dementia.

The authors interviewed 13 women and 7 men who were caring for a spouse with dementia.  They identified eight of these caregivers as resilient although caregivers in general had both resilient and non-resilient characteristics.

Similar to research I discussed in my last post, resilient caregivers were able to maintain continuity with their previous life, stayed positive, and frequently relied on humor in their approach to life and their interactions with their loved one.  They tended to use the experience of caregiving as an opportunity to learn about dementia and develop new caregiving skills.  Having more disposable income was helpful because it contributed to a better quality of life overall, but money alone wasn’t enough to foster resilience.

Most important to me, caregivers fostered resilience through their interactions with community and societal resources.  This included support from family and friends as well as broader social participation.

For example, participation in dementia support groups and the friends made through those connections were particularly important because of the ability to share experiences and expertise with others who understand what they are going through.

Resilient caregivers were more likely to recognize their own limitations.  When they needed a break, resilient caregivers took advantage of day care, respite care, and home help.  In fact, the use of respite care was an important factor distinguishing resilient from non-resilient caregivers.  Caregivers who didn’t use respite care said they unaware of the service, did not know how to access it, or did not feel like they were ready to use it.

This suggests to me that health and social service professionals who interact with caregivers can do a better job of educating them about the availability of these services, how they can access it, and the importance of using these types of support services early, before they are burned out.

Next week I’ll share some useful resources for caregivers and how to find them in your community.

In the meantime, what supports have helped you stay resilient as a caregiver?

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Caregiving and dementia Part 1

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Couples and Ponds by jennie-o available under Public License

Couples and Ponds by jennie-o available under Public License

All caregiving is stressful. After all, you are directly impacting the life of a loved one, often in very personal and intimate ways.

About 44 million people worldwide have dementia. By the year 2050 it is expected to be 135 million.

Caring for a person with Alzheimer’s Disease or other dementia can be particularly difficult because of the progressive nature of the disease and the effect it has on the individual’s personality and ability to communicate. People with dementia are less able to do basic self care tasks than those with other illnesses, particularly in the later stages of the disease.  In addition, caregiving for Alzheimer’s Disease tends to last longer ranging from 4 to 20 years compared to an average of 4.6 years for all conditions.

Compared to other patients, people with dementia have on average more days of contact with the health care system, use hospital and skilled nursing facility services more often, have more inpatient days, and see more clinicians per year. People with dementia have an increased risk of adverse drug events because of the number of medications they take and are at greater risk of being prescribed an inappropriate medication.  In 2012, one in four people with dementia or multiple chronic illnesses were exposed to at least one high-risk medication.  Caregivers are usually responsible for managing these visits, making sure the bills are paid, and keeping track of medication as well as all the other aspects of care.

In the U.S., an estimated 15 million families provide care to people with dementia.  Dementia caregivers spend more time in caregiving, have more care responsibilities, and report more financial burden and emotional distress than caregivers of older adults without cognitive impairment.

According to the Alzheimer’s Association, only 6% of caregivers for a person with Alzheimer’s are spouses. Most are children. This makes sense. Women live longer and are, therefore, more likely to develop Alzheimer’s or other dementia and are also more likely to be widowed leaving a child (usually a daughter) as her primary caregiver.  Or if the spouse is still alive, they are likely to need care themselves.

While many of the caregiving issues are the same, caring for a spouse versus a parent carries unique challenges because of the nature of the relationship.  One recent paper by researchers at Lancaster University in England discusses the results from ten qualitative studies published between 2004 and 2013 that examined the impact of dementia on couples’ relationships.

They identify several themes across these studies.

Couples worked to keep a shared identity as a couple. Dementia was something external to the couple even though one person had the illness.

Coping involved teamwork and an ability to adjust to shifting roles and responsibilities as the dementia progressed. Some couples planned the transition while for others it was a more organic process.  Shifting roles led to different power dynamics which also influenced each partner’s  identity. Some spouses embraced the new responsibilities, others felt them only as a burden.

Partners were attuned to how changes impacted the other. The spouse with dementia wanted to protect their partner and avoid burdening them. The caregiver wanted to protect their spouse’s autonomy and sense of self.  In both cases, they had to change their expectations as the dementia advanced.

Couples were resilient and demonstrated that in a number of ways. For some this meant continuing with their usual activities no matter what. Others reevaluated their life together and developed strategies and adjustments to make the most of their remaining time together.

It seems so obvious to say that when one spouse is diagnosed with dementia the couple is affected.  Our current approaches to treatment and research, however, don’t always incorporate the couple as a unit. This paper highlights some of the reasons that is so important.

More on caregiving and dementia in upcoming posts.

In the meantime, have you or someone you know cared for a spouse with dementia? Do these themes resonate with that experience? 

Book review: Still Alice

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By now I istill alicemagine most of you reading this have heard of Still Alice by Lisa Genova, or at least the movie based on it starring Julianne Moore as a linguistic professor who is diagnosed with early-onset Alzheimer’s Disease.

I always have my eye open for non-textbook materials for students to read in my Mental Health and Aging class so my read of this book was with that in mind.   I have relied on chapters from Mental Disorders in Older Adults (Zarit and Zarit, 2011) and The Alzheimer’s Project from HBO Documentary Films.  Zarit and Zarit provide excellent clinical material, in particularly useful insights on when memory loss is normal and when it’s a sign of a larger problem. The Alzheimer’s Project includes a series of films about the science behind ongoing research on Alzheimer’s; profiles of individuals with Alzheimer’s, their families, and the many challenge they face; and a variety of supporting materials.

Still Alice is definitely a candidate to add to the list next time I teach this class. Why? For one, it’s a quick, easy, and engaging read that would provide a nice complement to Zarit and Zarit.

Second, the story focuses on early-onset Alzheimer’s. While less prevalent than later onset of the disease, it is equally devastating to the individual and his/her family and includes some different challenges. In particular, with onset in the 50s, 40s, or even earlier, it disrupts a different stage of life – mid- or even early- career, perhaps younger children, and a different orientation to the future.

Finally, it’s told from the perspective of the person with Alzheimer’s. To me this was one of the most compelling aspects of the book and Lisa Genova has clearly done her research. Watching from the inside as Alice declines, her efforts to cope, and her increasingly infrequent moments of clarity is gut wrenching. In her mind, her husband goes from John to that man in the chair or the man who owns the house, her daughter Anne becomes the Mother, and her daughter Lydia is the actress. Her thoughts repeat and twist back on themselves. Something that seems so important and monumental one moment is forgotten in the next when her attention is captured by something else. It’s this perspective that I think will make it a good addition to a syllabus. As social workers, we always try to start where the person is and empower them to the extent they are able, but it can be difficult to do when the individual has a hard time communicating. Having a window into where someone with Alzheimer’s is, even if that window is a fictionalized one, seems like it would be of great use to social workers and other health care professionals.