living your best to the end

Dementia – more than memory loss: it’s a broken brain

Dementia: Communication, hard-to-manage behaviours and safety A much needed re-framing of Dementia from Alberta Health Services clinical nurse specialists, Jennette Coats and Loralee Fox, who embrace care and caring for those with ‘broken brains’. I sat in on their extremely practical and sensitive strategy session for supervisors of Home-Care Workers organized by Revera Health Care.Whose patient population increasingly has one or more Dementia: Alzheimer’s, Lewy Body, Fronto-Temporal Lobe, Vascular Attendees included nurses, occupational therapists, social workers, personal support workers and physiotherapists who shared some of their own coping stories, dealing with their own parents with Dementia: “I could tell my mom all the awful stuff about my divorce. She’d forget as soon as I told her – so I got to ‘dump’ without guilt.” As the broken brain description implies, it’s more than just memory loss that caregivers cope with. It’s the responsive b behaviors – aggression, anxiety, agitation, wandering – that drains emotionally and physically. One of the strongest messages acknowledged the issue of time: Caring for someone with violent behaviours of dementia can take 50% more time Staying safe takes time: trying to be efficient can be self-defeating “Rushing through can cause emotional distress and increase anxiety, agitation, and aggression.” From the Gerio Psychiatric Education program in Victoria British Columbia, the acronym, ABCDE Apologies: One of the most powerful the calming strategies I’m sorry – I didn’t mean to upset you. I’m sorry – you’re right. I’m sorry I made you feel (angry, hurt, dismissed..) I’m sorry – I know you’re trying so hard. I’m sorry – this must be so hard for you. One of the...

Dementia and Alzheimer’s Patients share hope and humour

“I’m 62. I was diagnosed at 46. You do the math” Christine Bryden, Person with Dementia 16 years of living with Alzheimer’s and Christine Bryden’s making the audience of 300 laugh and cry at A Changing Melody: A learning and sharing forum for persons with Early Stage Dementia and their partners in care. No surprise that Alzheimer’s is the second most feared disease (Cancer being #1). What I learned from the Forum helped put that fear into more practical perspective.   On overcoming fear and stigma: Fear of what others may think often prevents getting diagnosis. Get in early and get help early! Your life has meaning. Focus on relationships based on love and connectedness. Don’t let fear mask your worth. Reach out over the barrier of stigma to help overcome fears. (author’s note: doesn’t that apply to many health issues?) (An example from an audience member) “I talk to people in airplanes about having dementia. At first, they simply don’t believe it.”  (love it: educating a captive audience) From Mary McKinley, Canada (who organizes social events at retirement home, she uses an online journal set up by her son.) “Feeling is, we with dementia have no insight. That is so wrong! I have to use drugs to help deal with anxiety in others. Noise and sound are amplified. Multiple conversations are  really hard. Part of my brain that controls anxiety has no sense of proportion; Key words are: SLOW DOWN! The processor in my brain is struggling. When I need I quiet time, hiding out in the bathroom is a solution. However, my brain doesn’t send ‘bathroom’ signals....

Dementia: Feeding tubes may add to risk of bed sores

 PEG or Percutaneous endoscopic gastric feeding tubes, long assumed to help bed-bound dementia patients stave off or overcome pressure ulcers, may instead make the wounds more likely to develop or not improve, according to a study. “We see a substantial risk of people developing a stage II and higher pressure ulcer. We believe these risks should be discussed with family members before a decision is made to insert a feeding tube in a hospitalized nursing home resident with advanced cognitive impairment.”  Joan Teno, MD, MS, the study’s lead author and a gerontologist and professor of health services, policy and practice in the Public Health Program at Brown University in Providence, R.I., said in a news release, “This study provides new information about the risks of feeding tube insertion in people with advanced cognitive impairment.” In this study, the researchers found that among patients who did not start with an ulcer (bed sore) , 35.6% of those with a feeding tube ended up with at least a stage II ulcer, compared with 19.8% of patients without a feeding tube. The researchers found that the chance of getting an ulcer was 2.27 times higher for people with feeding tubes than for those without. The risk of developing a more serious stage IV ulcer was 3.21 times higher for those with feeding tubes. Among patients who already had an ulcer, the researchers found that 27.1% of patients with a feeding tube experienced short-term improvement, while 34.6% of those without a feeding tube experienced healing in a comparable time frame. In a previous survey, three-quarters of physicians thought the nutrition delivered by feeding...

Music Therapy: Unlocking the soul

Music has charms they say.. (Joe Jackson: ‘Slow Song’) Amy Clements-Cortes For Amy Clements-Cortes, PhD, MusM, MTA, the charm of music is its ability to accomplish a multitude of health and wellness goals.One of Amy’s areas of specialty is end of life music therapy and specifically using music to help clients complete relationships. “When we complete relationships in our lives, there are key sentiments that need to be expressed to help us accomplish these completions. “I Love You,” “I Forgive You,” “Forgive Me,” “Thank You,” and “Goodbye.” Music can unlock emotions and communication where memory loss or the ability to speak has become an issue. For example with dementia, Parkinson’s and Stroke survivors. “Music provides an outlet for expressions of grieving and loss as people come to the end of their lives. Music helps express feelings that are difficult to speak about such as Holocaust experiences.” Working with fellow health-care professionals such as those in speech/language therapy: “I can help augment the work clients are doing in speech therapy by engaging the client in vocalizing vowel sounds to music, so they can hear their own voices.” It’s not just any music that Amy uses: she makes it specific to the situation and the client, asking what music they liked, gently coaching with prompts such ‘what soothes you, what songs did your relative listen to when they were in their 20s?.’ With the populations Amy treats, this isn’t always possible. “It’s a bit of a fishing expedition I’ll research what music was popular in their day, or if they’re from another culture, will consult with musicians from that culture.” Amy...