Dementia and family dynamics

It may be hard to imagine, but for some families, dementia has a silver lining. The diagnosis may bring families closer as members work together to solve a common challenge. It forces intimacy when bodily functions become less personal. And it can cause relatives to depend on each other for emotional support.

More often, though, dementia sparks conflict, guilt, grief, sacrifice, uncertainty—negative emotions that can affect the quality of life for the person with dementia and their loved ones. Studies show that more than most other diseases, dementia increases stress and decreases mental health and well-being in caregivers for a variety of reasons:

Caring for someone with dementia is difficult, time-consuming, and may necessitate the caregiver leaving their job and abandoning hobbies and relationships.
Dementia can be isolating because it’s so individual.
The progressive and unpredictable nature of dementia makes planning difficult, increasing uncertainty and anxiety.
Many family members experience guilt when caring for someone with dementia, wondering if they’re doing enough for their loved one.
Adult children of people with dementia may find themselves bathing, dressing, and feeding their parents. The resulting sense of loss can cut both ways: Adult children grieve the parent they knew, and the person with dementia—depending on how lucid they are—may grieve the effect their diagnosis has on their children.
Frustration can arise when the care recipient is unable to express gratitude.

You may be dealing with these stressors and/or others, making your experience with dementia far from any silver lining. If that’s the case, here are some ideas to help maintain your well-being and navigate the land mines of family dynamics and dementia.

Remember that what you’re experiencing is normal.

All your emotions are shared by millions of loved ones around the world. You may feel alone—you’re not.

Stay flexible.

Dementia is not fixed. The disease evolves and changes so what you’re handling right now may change next week. Try not to fixate on one way of doing things.

Be patient.

This is easier said than done. But try to keep in mind that your loved one isn’t intentionally being difficult. The best care you can provide is a healthy dose of patience.

Ask for and offer help.

If you’re in over your head, ask your family for support. Try to make your requests specific versus open-ended: “I need someone to do the grocery shopping. I need you to take mom to the doctor on Tuesday. I need coverage on Wednesday so I can take a day off.” Remember that if you need help, other family caregivers may need support as well. Check in and see how everyone is doing and what might make it easier for everyone.

Communicate.

Consider weekly family meetings to discuss the latest developments and who’s handling what.

Consider an intermediary.

When tensions run high in already fraught situations, the results can be explosive. Try to diffuse the situation before it gets to that point by using an intermediary to negotiate with difficult family members if disagreements about care seem insurmountable.

Hire support if necessary.

Bring in professionals if you need to. Professional caregivers, housekeepers, personal assistants, and others can relieve you of the burden of care when it gets too heavy.

Take care of yourself.

Studies show that caregivers who adapt to stress share two qualities: optimism and resilience. Resilience is the ability to cope effectively and adapt. Optimism is the expectation of a positive outcome in the face of adversity. Ask yourself what you can do to increase these qualities in yourself. Regular exercise? Time away? Professional support? Banish the misconception that self-care is selfish: you simply can’t take care of your loved one unless you first take care of yourself.

Caring for someone with dementia is especially hard when family dynamics are unhealthy. The most important thing you can do for your family, yourself, and your loved one is to work together and support each other. Quality of life is possible—if you know how to create it.

Diabetes and dementia

Due to increasing rates of obesity, inactivity, and an aging population, type 2 diabetes is more prevalent in our society than ever before. In high-income countries, death from diabetes dropped from 2000 to 2010, but then increased from 2010 to 2016 — leading to an overall 5% increase in premature deaths since 2000. Particularly troubling is that type 2 diabetes is now being seen frequently in children, due to their obesity and inactivity.

It has been known for many years that type 2 diabetes increases your risk for strokes and heart disease. More recent studies have shown that diabetes also increases your risk of dementia. What has not previously been investigated, however, is whether the age of onset of diabetes makes a difference in your risk of developing dementia.

New research about age at diabetes onset and the risk of developing dementia

A newly published study examined the association between age of onset of diabetes and the development of dementia using a large, ongoing cohort study. The cohort was established in 1985–88 among 10,308 employees aged 35 to 55 years (33% women, 88% white) in London-based government departments. Data on diabetes exposure, including fasting glucose and the Finnish Diabetes Risk Score, were obtained at ages 55, 60, 65, and 70. (The Finnish Diabetes Risk Score includes age, family history of diabetes, personal history of elevated blood glucose, fruit and vegetable consumption, blood pressure medication, physical activity, body mass index, and measured waist circumference.)

Dementia due to any cause was the primary outcome measure. In addition to diabetes, they also examined the effects of age, sex, race, smoking, alcohol consumption, physical activity, fruit and vegetable consumption, high blood pressure, body mass index, coronary heart disease, heart failure, stroke, medications, and the Alzheimer's risk factor gene, apolipoprotein E.

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The long-term effects of diabetes on dementia

From 1985 to 2019, 1,710 cases of diabetes and 639 cases of dementia were recorded. For every 1,000 people, examined yearly, the rates of dementia were 8.9 in those without diabetes at age 70. Comparable rates of dementia for those with diabetes were 10.0 for those with onset up to five years earlier, 13.0 for six to 10 years earlier, and 18.3 for more than 10 years earlier. These striking results clearly show that the earlier you develop diabetes, the greater your risk is for developing dementia.

How diabetes can lead to dementia

There are multiple reasons why years of type 2 diabetes may lead to dementia. One reason is related to the effects that diabetes has on the heart, as heart health is related to brain health. Heart disease and elevated blood pressure are both associated with strokes that, in turn, can lead to dementia. However, strokes do not appear to be the complete answer, as some studies found that diabetes led to an increased risk of dementia even when strokes were controlled for.

Another factor relates to the episodes of hypoglycemia that commonly occur in diabetes. Although tight control of blood sugars has been proven to reduce the long-term risks of heart disease and strokes, tight control can also lead to hypoglycemia, memory loss, and dementia. Here, the reason is likely because low blood sugars are known to damage the hippocampus — the memory center of the brain.

One of the more intriguing hypotheses is that diabetes directly causes Alzheimer's disease. Indeed, Alzheimer's disease has even been called "type 3 diabetes" because of shared molecular and cellular features among diabetes and Alzheimer's. For example, insulin plays a critical role in the formation of amyloid plaques, and insulin is also involved in the phosphorylation of tau, which leads to neurofibrillary tangles. In other words, whereas insulin resistance in the body can lead to type 2 diabetes, insulin resistance in the brain can lead to the plaques and tangles of Alzheimer's disease.

Reduce your risk of diabetes and dementia

The good news is that you can reduce your risk of type 2 diabetes — and your risk of dementia. Speak with your doctor today about whether the following lifestyle modifications would be right for you. Note that these life changes are helpful even if you have a diagnosis of diabetes or prediabetes.

Engage in aerobic exercise at least 30 minutes each day, five days each week.
Eat a Mediterranean-style menu of foods.
Maintain a healthy body weight.
Treat high blood pressure.
Treat high cholesterol.
Don't smoke.

Lastly, social activities, a positive attitude, learning new things, and music can all help your brain work at its best and reduce your risk of dementia.

Creating a Dementia care plan

Learn why a dementia care plan is so valuable for caregivers and understand how to create one.

Claudia, an 84-year-old woman with dementia and physical limitations, including confinement to a wheelchair, had been living in her own home with 24-hour caregivers. It was increasingly clear she would benefit from more socialization. Her son set about and located an appropriate adult day setting, and enrolled his mother in this Alzheimer’s setting two days per week. It turned out to be a great answer to her social needs as well as other things they had not anticipated.

The Care Plan Process

Upon admission, the care team, consisting of the nurse, social worker, and activities director, conducted their assessments, and then collaborated on developing a care plan for Claudia. When the plan was completed, they reviewed each element with her son, and revised the plan where necessary, with his input. By the end of the care plan process, everyone came away with a greater understanding of who Claudia was, both in the present and in the past, and how they would help her move toward her highest level of functioning.

In long-term care facilities, skilled nursing, health centers, and adult daycare settings throughout the United States, care teams are required to develop care plans for each resident or participant. No matter the resident’s illness or disability, dementia or not, within 30 days of admission, the care team must assess their new admission, and with an interdisciplinary approach, develop a plan of care. The resident, and/or a family member, is invited to the care plan meeting, and the interdisciplinary team presents its findings and goals of care. The initial and ongoing collaboration of the care team, the resident, and family is key to the quality of care.

A care plan will address some or all of the following topics:

Biography
Communication
Mobility
Toileting
Eating Patterns
Orientation/Cognition
Psychosocial/Behavioral
Caregiver Support Needs
Recreational Activities

Each of these areas includes a detailed description of the current functioning, needs and problems, the expected goals and outcomes, the responsible discipline(s), what interventions are planned, what services will be provided, and dates for completion of each goal. Care providers reading the individual care plan will know what is expected of them when working with this resident. The family will also understand the goals of care.

A Plan for Dementia Care

Dementia residents or participants will have a dementia care plan, which includes a more personal account of who the person is. Drawing on the work of Thomas Kitwood, professor and author of “Dementia Reconsidered: The Person Comes First,” this dementia care plan is designed to enhance the experience of people living with dementia, by presenting the resident or participant as if he or she is speaking. It is written to assist caregivers in understanding the person, and includes personal information that is important for caregivers to know and use when working with the resident. For instance, it will include important information about the individual, such as their name and date of birth, the name they answer to, their likes and dislikes, their background and interests, and ideas for caregivers to use when speaking to them.

When reading the dementia care plan, a caregiver or person new to the individual would be able to answer “who is this person?” and “what makes them tick?” The ultimate goal is to provide a voice for the person, especially when they are unable to do so for themselves. Another way of describing it is a “This is Me and This is What I Need” document. Very importantly, it is written in first person, and may address any or all of the following areas:

My Cognitive Ability
My Biography
My Family, Friends, and Community
My Personality
My Physical Health
My Eating and Drinking Preferences
My Environment
My Safety and Areas of High Risk
My Spirituality
My Sensory Impairment
What I Like to Do
Things I Enjoy and Do Not Enjoy

You can see that some of the elements are similar to the earlier care plan, and in fact that care plan will inform this dementia care plan. A major difference is that the dementia care plan is written in first-person—as if the person himself is speaking. While the earlier care plan is more clinical in nature, this dementia care plan will present the individual in a personal way, and address what is needed for caregivers to be successful in their work with the individual. In a long-term care setting or dementia care unit where caregivers change shifts regularly, or when there are staff changes, these care plans can be so valuable for a caregiver’s introduction to their new care recipient, and they help smooth any new, caregiver-related transitions.

The five A’s of Alzheimer’s

Alzheimer’s disease is a progressive disease that affects memory, thinking and behaviour. It's a form of dementia with symptoms that grow in severity over time. The risk of Alzheimer’s increases with age and is most common in people over 65.

The symptoms of Alzheimer’s are commonly referred to as the 5 A’s of Alzheimer’s which include: Amnesia, Apraxia, Agnosia, Aphasia, and Anomia.

Amnesia

Often the most recognized symptom, whichrefers to memory loss. Those living with Alzheimer’s can experience a lot of difficulty recalling information and experiences that have happened in their lifetime, this can also affect their ability to retain new information such as instructions. Amnesia can be as simple as forgetting an appointment or as severe as difficulty remembering a loved one.

Speaking with your loved one with short, simple sentences at a slower pace can help them process and understand new information.

Apraxia

Refers to a loss in voluntary motor skills. This affects the ability to perform purposeful movements or familiar tasks such as cooking, shaving, or walking. A person living with Alzheimer’s disease can forget how to do daily living activities.

These changes can increase the risk of falls but keeping active can possibly delay the physical changes in apraxia.

Agnosia

Is the inability to recognize faces, objects, voices, or places. Those living with Alzheimer’s can not only lose the ability to recognize the object, but they may also forget its use.

Using gestures to identify objects, labels, and context clues can aid in communicating with those who are affected.

Aphasia

Refers to impaired communication through speech. When expressing thoughts through speech, the affected person’s speech may seem jumbled. They can also experience problems understanding what's being said.

Allow your loved one the chance to respond even if it seems to be taking longer than usual. Simplifying communication with straightforward language and clear choices can help one understand and communicate easier.

Anomia

Is the loss of ability to identify names of everyday objects. The person may know what an item is and its use but cannot figure out the correct word or term.

It’s important to remember that it will take longer for someone experiencing anomia and other symptoms of Alzheimer’s disease to be able to verbalize their thoughts.

Over 747,000 Canadians are living with Alzheimer's in Canada. Alzheimer’s disease progresses with time, and it can be hard to remember each step in caring for a loved one who's affected.

With each A of Alzheimer’s, patience is key. At Senior Helpers, our caregivers are expertly trained to support your loved one’s unique needs as they change over time. Our Senior Gems® program is used to help caregivers assess and provide care for Seniors with Alzheimer’s and dementia. Contact us to learn more.

Everyone is affected by Alzheimer’s disease differently. It's important to seek the advice of a medical professional to provide the right health information that relates to you or your loved one's individual medical condition(s).

Early-onset Dementia: How to plan for the future

A diagnosis of dementia can be devastating no matter your age. However, older adults, especially those over the age of 65, tend to be more aware of the possibility of dementia, and know that their risk statistically increases each year. But for younger adults, being diagnosed with dementia between the ages of 30 and 60 is not only upsetting—it can be outright shocking.

What is early onset dementia?

Early onset dementia, also known as young(er) onset dementia, is the occurrence of dementia in people under the age of 65. It is considered an uncommon form of dementia. According to the Mayo Clinic, only about five or six percent of Alzheimer’s cases are early onset. However, this number could potentially be larger. Many adults in this age category do not anticipate developing dementia, so may not get tested until the later stages of the disease.

What causes early onset dementia?

This question is still the subject of research, and for many cases of early onset dementia, physicians aren’t sure of the direct cause. Research does confirm, however, that individuals with Down syndrome are at an increased risk for early onset dementia, due to an extra copy of chromosome 21, which can cause protein buildups in the brain.

Early onset dementia can also be linked to family history and genetics. According to research, mutations in three key genes are linked to early onset dementia. People with a family history of dementia often seek out genetic counselors to assess their risk and check for these mutations.

Learning about your condition

Before you start planning for the future after a diagnosis of early onset dementia, it’s important to learn what might be coming down the road ahead. Two of the most important first steps include:

Learning what type of dementia you have: Alzheimer’s is the most common form of dementia, but not the only one. There is also Lewy Body dementia, frontotemporal dementia, vascular dementia, mixed dementia and various conditions that can lead to dementia, such a Creutzfeldt-Jakob disease. Knowing the type of dementia you have can help you be better prepared for what your symptoms might be, and what resources might be most helpful to you.

To learn more, please visit our guide to understanding different types of dementia.
Researching the different stages of dementia: Dementia is a progressive disease. In the early stages, it may not feel like much has changed. You’ll generally be able to take care of yourself even with lapses in memory and changes to your normal mood or behavior. In the later stages, however, you will need support in most areas of life. It’s important to be prepared for these changes, and to recognize that your current condition will change over time.

To learn more, please visit our guide to navigating the different stages of dementia.

Preparing for your future care needs

Because of their younger age, people with early onset dementia may face different challenges than those who develop the disease at a later age. The below issues are important to consider as soon as possible, while still in the early stages of the disease. It can be sobering, but it’s essential to remember that if you don’t make decisions while you are able to, someone else will be making these decisions for you in the future.

Employment and finances: Most people who develop early onset dementia are not at the age of retirement. This makes considering your employment and financial situation after your diagnosis a must.

At work, start by having a conversation with your employer:
- Have medical documentation prepared. Your doctor can also provide an assessment of your current ability to work
- Be honest about what your limitations might be moving forward, and how you plan to proceed with your employment as the disease progresses
- Ask if there is an employee assistance program in place that might offer support
- Learn more about your options regarding disability insurance, medical leave and continuing coverage after you leave your job using COBRA
  
  Talking with a financial counselor about managing your finances and undergoing a benefits check-up could also be helpful during this time. You should also look into putting together estate planning documents:
  - Wills
  - Powers of Attorney
  - Trusts
  - Do Not Resuscitate order
The needs of your children: When older adults develop dementia, there’s a higher likelihood that their children are independent adults. Unfortunately, many with early onset dementia have children that may still be young.

It’s important to make sure that your children understand what your diagnosis means, and receive the information they need on ways your memory, behavior and ability to communicate might change. This is even more important if one or more of your children will serve as caregivers. Encourage questions, share what information you have and seek out answers to what you do not know together. Your children should also be informed of your financial and future care decisions, if age-appropriate.
Building a network of support and expressing your preferences for care: Depending on your age, you may not have even begun to think about needing a caregiver, who that person will be, and how and when they will help you. If so, it’s important to consider these things as soon as you can. Open up discussions with family, friends and other loved ones about who can help and in what ways. Be sure to clearly express your own opinions, wants and needs while you can. You might also want to write down whatever plan you come up with—it can change, of course, as your situation changes, but it will serve as a good starting point and reference for your loved ones.

Resources

Our services at Benjamin Rose Institute on Aging can support you and your caregiver(s) on your dementia journey. Our WeCare…Because You Do care coaching service can support you and your loved ones in building a care plan, addressing financial concerns, overcoming challenges and so much more.

Other resources include: