The post today is a collection of resources about frontotemporal dementia. As always, we have offered a range of options, online, physical copies and downloads.
Book: Frontotemporal dementia syndromes, John R Hodges. 2007.
In the past decade there have been enormous advances in our understanding of frontotemporal dementia and related syndromes. The impetus for these advances has come from a number of directions including genetic discoveries, new approaches to neuroimaging and improved neuropsychological understanding of the cognitive aspects of the condition. Frontotemporal Dementia Syndromes provides a much needed review of the current status of our knowledge of these syndromes. The book starts with chapters reviewing the history of the condition and describes the presenting clinical, neuropsychiatric and neuropsychological features, before reviewing, in detail, the areas of greatest recent research progress. The book concludes with a chapter proposing a multidisciplinary approach to patient management. Frontotemporal Dementia Syndromes will be essential reading for neurologists, psychologists, psychiatrists and other clinicians interested in cognitive and behavioural disorders, as well as to basic scientists working in the area of neurodegeneration.
Children’s Resource: Frank and Tess – detectives! A children’s activity book about frontotemporal degeneration (FTD), Tiffany Chow & Gail Elliot. 2012.
Frontotemporal Degeneration also FTD, is an illness that affects the brain. This activity book was created to children, ages 5-9, who are living with parent affected by FTD. Although every person and family experiences FTD in a unique way, this activity book introduces situations that may be familiar to those who are living with FTD. Our goal is to provide valuable, age appropriate information about FTD and offer some helpful coping skills for children. Many of the activities have been specifically designed for the child of a parent with FTD to do together. To reinforce lessons in the book we encourage both parents to engage in the activities.
This is a free, downloadable resource you can access here.
Article:Life Enhancing Activities for Family Caregivers of People With Frontotemporal Dementia, Dowling, Glenna A.; Merrilees, Jennifer; Mastick, Judy, Alzheimer Disease & Associated Disorders, April-June 2014
Aberrant psychological and behavioral symptoms are common in patients with dementia. These symptoms have negative consequences for family caregivers, causing stress and burden. Frontotemporal dementia (FTD) symptoms cause more pronounced stress and burden on caregivers than those associated with Alzheimer dementia. In this randomized, attention control pilot study, we delivered 5-weekly, one-on-one, positive affect intervention sessions to family caregivers of people with FTD. The program, Life Enhancing Activities for Family Caregivers: LEAF was conducted in-person or by videoconference with caregivers across the United States. Measures of affect, caregiver mood, stress, distress, and caregiver burden were assessed at baseline, end of sessions, and 1 month after completion. Twenty-four caregivers (12 intervention and 12 attention control) participated. At the end of the intervention, scores on positive affect, negative affect, burden, and stress all improved in the intervention compared with the control group. These scores continued to show improvement at the assessment done 1 month after intervention. Subjects were receptive to the skills and the delivery methods. The positive emotion skill-building intervention proved feasible especially in the internet videoconference delivery format. The intervention promoted positive affect and improved psychological outcomes for family caregivers of people with FTD.
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Memoir: An evolution of love : life and love with Frontotemporal Dementia, Marie Sykes, Michelle Stafford. 2007.
Bob passed away on April 7, 2006, from Frontotemporal Dementia (FTD) at the age of 50. He struggled mightily with this illness and we struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.
This book captures the memory and character of “Old Bob”—the Bob we knew before the onset of an illness that robbed him of his talents and capabilities.
It also shows the ways in which we learned to cope with and appreciate the “New Bob”—the Bob we cared for and lived with through the course of the illness.
Website: AFTD Kids and Teens
When a parent is diagnosed with frontotemporal degeneration kids may feel isolated, confused and scared. The AFTD Kids and Teens website has been launched to provide a source of information for kids and teens in affected families. The site includes answers and support for young families faced with raising their children to maturity as one parent regresses. The site has age-appropriate information about FTD and outlines the changes it can cause in family life. There is the opportunity for children to contribute poems, art, essays or videos about their own experiences with FTD.
YouTube: It Is What It Is – Frontotemporal Degeneration: Tragic Loss, Abiding Hope, The Association for Frontotemporal Degeneration. 2013.
An 18-minute documentary that chronicles the lives of four families affected by frontotemporal degeneration (FTD).
Teen resource: What about the kids? Frontotemporal degeneration : information for parents with young children and teens, The Association for Frontotemporal Degeneration. c2012.
You are probably reading this book after learning the devastating news that your spouse has frontotemporal degeneration (FTD). You are terribly worried about your partner and how you will lose the love of your life to this devastating, progressive disease. But naturally, you are very concerned about your kids. How will they handle their parent’s illness? Unlike many other dementias, FTD frequently occurs in middle age, meaning there are often children at home. When any parent faces a serious illness, their young children and teens need support and flexibility as well as lots of love and understanding. Few situations can be as stressful on a family as losing a parent to a degenerative brain disease.
FTD is a rare disease with challenging symptoms that can cause considerable impact on the family. As FTD progresses, it creates ever-changing obstacles and unique challenges for families to manage. Meanwhile, children grow and change. Their development heads in the opposite direction as their ill parent’s. What your kids can understand about the disease and what it will mean for their lives will evolve over the years. Children are very perceptive. They will be aware that a family member has changed or is ill. Maintaining an open dialogue with your children will help them cope and create a sense of well-being. Most importantly, taking care of yourself by practicing positive behaviors that decrease your anxiety will set a good example for the kids.
As difficult as it may be for you to admit, at some point you will need to prioritize your child’s wants and needs above your spouse’s. Sometimes, that means turning to an adult day program or a long-term care facility earlier than in other families without children. Do not measure your choices against others’. Trust yourself to make the right choices for your family.
This booklet’s goal is to assist families like yours to navigate successfully FTD’s diagnosis, challenges and changes. Furthermore, this booklet aims to reassure you, the well parent. Children and teens can become resilient and confident adults despite—and often as a result of—adversity. Your strength will help your children feel safe and will show them how people who love each other help one another in tough times. No one welcomes the changes that FTD brings. Yet, hidden within the loss is the potential for unexpected positive growth.
This book is available as a free download here.
Book: Pick’s Disease & Picks Complex, edited by Andrew Kertesz, David G. Munoz. 1998.
Pick’s disease, a form of dementia often accompanied by aphasia has been know for over a century. The highly complex symptoms assocaited with frontal and temporal lobe deficits have made it difficult to diagnose. This book presents the clinical and pathological manifestations of Pick’s disease. It cover clinical depression, neuropathology, biology, and neurogenetic aspects of the disease. It compares Pick’s and Alzheimer’s, the multiple atrophies and other neurodegenerative diseases.
YouTube: Planning for Hope: Living with Frontotemporal Disease, Produced by Cindy Dilks and Susan Lee Grant. 2010.
Six families share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones. Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families. Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.
Note: this is an hour-long feature film.
Article: Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias, Dementia, May 2014
Atypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.
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