When I give presentations on Brain Health and Cognitive Stimulation Therapy I am often asked about genetic testing for Alzheimer’s. Individuals are wondering if they should get tested to see if they carry the genes that predispose them to this disease.
There is a lot of angst inside of people who have a family history of Alzheimer’s disease. A part of them wants to know and the other part would prefer to remain in ignorance. It is a dilemma that is difficult to solve.
If you were faced with this choice, what would you do?
It bears thinking about.
The problem that causes the inner conflict is the limited treatment options available if you find that you are carrying the gene. It is not like carrying the gene for breast cancer, where there are surgical options. A surgical option is not available in this case. You can’t remove your brain.
As well, the drug trials have been spectacularly unsuccessful. The brain is complex and the current trials have not been able to have a meaningful effect on disease progression. This puts doctors in a difficult position when it comes to diagnosis.
When people ask me the question, I ask them: “Will it make a difference to you?”
I think the answer to this question will help decide what is the right choice — to know or not to know.
If you knew you were carrying the gene, would you feel like you are living with a ticking time bomb inside of you? Would it push you towards despair and depression? Would you just give up, feeling like the end is inevitable? Or would it motivate you to change your behavior?
Your reaction to this information is important.
So what would I do?
While the decision to find out whether you are a carrier is a personal decision, I think that you should live as if you do have the gene. I don’t need a genetic test to motivate me. But maybe you do. Whatever you decide, you should make the changes in your life that will help reduce dementia risk.
We know that lifestyle choices can have a huge impact on whether you increase or decrease your dementia risk. Much of this is common sense advice. But while those choices can improve overall health, it may be difficult to find the motivation to change behaviors.
The medical profession in America has taken a step forward in information disclosure around dementia once it is known.
The American Psychiatric Association and the American Academy of Neurology recently updated the measures for high-quality dementia care. In a move that they called “especially important and potentially controversial” the quality measures encourage physicians to disclose the dementia diagnosis to patients and caregivers.
The American Psychiatric Association has recognized that physicians have been reluctant to provide the diagnosis to patients and their families because they cannot necessarily offer treatment options. Doctors are concerned about the impact of the diagnosis on patients and caregivers, since this diagnosis may lead to depression and despair. A dementia diagnosis can create a downward spiral if there is not a viable treatment plan offered.
Interestingly, in the United Kingdom, the National Institute for Health and Clinical Excellence (NICE), an independent organization responsible for providing national guidance on promoting good health and preventing and treating ill health, recommends cognitive stimulation therapy as a treatment option for dementia.
I have seen first-hand the positive impact that cognitive stimulation therapy can make in the lives of individuals who have been diagnosed with dementia. In the UK, clinical guideline 42 which deals with best practices for dementia care states:
“People with mild / moderate dementia of all types should be given the opportunity to participate in a structured group cognitive stimulation programme. This should be commissioned and provided by a range of health and social care workers with training and supervision. This should be delivered irrespective of any anti-dementia drug received by the person with dementia”. [section 6.1]
This clinical guideline applies to everyone. Your personal treatment plan should include cognitive stimulation therapy.
In America, the new quality measures, which set out the best practices for treatment, make it clear that both the diagnosis of the syndrome of dementia and the underlying conditions should be communicated to the individual. The next step is to give that person some options that can be life-affirming for them. Cognitive stimulation therapy is that next step.
No matter what lies ahead in a person’s disease trajectory, we all benefit from the opportunity to interact and engage with others. Individuals with dementia often retreat into themselves due to the stigma of the disease. This isolation and withdrawal increases disease progression.
Cognitive stimulation therapy with a cognitive coach not only provides cognitive training opportunities, but also builds a relationship. And it is those relationships of support and affirmation that improve quality of life and reduce the depression and loneliness that comes with this disease.
While providing the diagnosis is an important first step, there must be viable options for individuals. And those options should include cognitive stimulation therapy.