Early-Onset Dementia: The Experience of Family Caregivers Adriana Shnall, MSW, RSW PhD Candidate Ida and Sam Ross Memory Clinic, Baycrest Factor-Inwentash Faculty of Social Work, University of Toronto

How I came to become interested in this topic 1. Ross Memory Clinic at Baycrest. 2. University of Toronto, PhD programme.

Early-Onset Dementia (EOD)  Dementia: progressive, chronic condition which involves a severe decline in a person’s ability to think, remember and reason (WHO, 1992).  EOD, term used for people that develop a dementia under the age of 65.  Difference between ‘early-onset’ and early dementia.  Difference between EOD and LOD.

EOD  In Canada, there are half a million people with dementia: 71,000 are under the age of 65 (Rising Tide Report; ~14% of dementia patients ).

Incidence vs. Prevalence  Incidence and prevalence are both terms that are commonly used to refer to measurements of disease frequency.  Incidence : the rate at which new cases occur in a population during a specified period.  Prevalence : the proportion of a population that is affected by the disease at a specific time.

Causes of EOD  The most common diagnoses in this group are:  early-onset Alzheimer’s disease (~50-70%) and  second most common is Frontotemporal dementia (FTD; ~ 20%).

Early-Onset Alzheimer’s Disease  characterized as a cognitive disorder.  The areas of the brain affected by AD produce symptoms of short-term memory loss, word-finding difficulties and visual- spatial problems (Merrilees & Miller, 2005)

First early-onset AD patient, Auguste Deter (1901), early 50s

Frontotemporal dementia (FTD)  Two variants of FTD  behavioural variant FTD (bv-FTD ), in which changes in personality and social conduct predominate.  language presentation, causing aphasia (partial or total loss of the ability to articulate ideas or comprehend spoken or written language, resulting from damage to the brain; Chow, Hynan, & Lipton, 2006 ). The language group consists of primary progressive aphasia (PPA) and the three clinical PPA variants (nonfluent/agrammatic, semantic, and logopenic; Gorno-Tempini et al., 2011 ).

FTD cont’d  Patients who have the language subtypes of FTD start by having language and communication difficulties.  In bv-FTD there is an alteration in the patient’s social conduct and personality (Merrilees & Miller, 2005).  Symptoms : apathy, disinhibition, aberrant social conduct, a distinct lack of empathy, alterations in eating behaviours and the development of motor and verbal stereotypies (Neary et al., 1998).

Family Caregiving  The majority of dementia caregiving research has been done on late onset dementia families.  The focus has been to identify the patient’s and the families’ characteristics which are predictors of caregiving stress and psychological and physical morbidity.

Family Caregiving, cont’d Although this presentation is on EOD, we’ll review findings of dementia caregiving in general and see how they compare with EOD.

Caregiver burden  This term is used to refer to the physical, psychological, social and financial problems that can be experienced by dementia caregivers.  Understanding why some caregivers report more burden while others remain the same or adapt over time is one of the most important goals of caregiver research (so we can know when, how and who to intervene with).

Patient Characteristics  Literature review shows that the only patient characteristic that is a consistent source of stress for families is:  Problem behaviour : aggressiveness, wandering and dishinhibited behaviour (Pinquart & Sorensen, review of 228 studies). However, when caregivers were looked at separately (e.g., adult children vs. spouses, functional/physical impairments did have a negative effect on spouses)

Caregiver Characteristics  Overall spouses with lower incomes, who have fewer social supports experience more caregiver burden.  Wives report more psychiatric morbidity than husbands (Yee & Schulz, 2000), but husbands have a higher rate of heart disease and metabolic syndrome influenced by the chronic stress of caregiving (Vitaliano, 2002).

What do we know about EOD family caregivers?  Very little! Much of what is known is based on the practical experience of professionals rather than on scientific evidence (Beattie et al., 2002)

What we know about EOD  People with EOD:  Are generally employed at time of diagnosis.  Have dependent children and/or parents.  Are generally physically fit and active (as opposed to people with LOD).  Have financial commitments (mortgages, children in school/university.  More likely to have a rarer form of dementia.

Issues in EOD  Tremendous stress due to the extraordinary consequences on emotional, physical and financial areas of life.

Issues unique to EOD  Unique problems occur due to the unexpected timing of onset.

Issues Unique to EOD  Financial concerns:  Triple financial threat:  Patient’s loss of income  Patient’s inability to qualify for financial programs.  Spouse cutting back/quitting job to be a caregiver.

Issues Unique to EOD  Most services are designed to help those who are older (e.g., drug coverage,OAS, day programs).

Issues unique to EOD  Misdiagnoses more likely (e.g.,depression, stress, burnout and menopausal changes).

Sign of an EOD?

Caregiving in EOD  Most EOD patients (82%) were found to have a family member as a caregiver (Harvey et al., 1998).  Most family caregivers tended to be in their 50’s, male as well as female (Harvey et al., 1998; Freyne et al., 1999;Williams et al., 2001).  A study comparing caregivers of persons with EOD vs. LOD found that caregivers of people with EOD reported higher level of burden than people with LOD (Freyne et al., 1999).

Caregiving in EOD  Long duration of caregiving in EOD (longer than LOD by 3.4 years) combined with lack of formal supports may be reason for higher caregiver burden (Williams et al., 2001).  Another explanation for the high strain reported in this group relates to their young age, which may find them inadequately prepared for role of caregiving (Arai et al., 2007).

Caregiving in EOD  High levels of anxiety in EOD caregiving; females more anxious than males (Harvey et al., 1998).  High prevalence rates of depression among caregivers, especially spouses (Harvey et al., 1998; Kaiser & Panegyres, 2007).  A unique anxiety and burden associated with the development of an EOD is the worry about genetic component and transmission to children.

Caregiving: Spouses and Children Issues.

Issues for couples

EOD Spouses/Partners  Of all dementia caregivers,spouses most at risk (Baumgarten et al., 1992; Cantor, 1983; Meshefedjian et al., 1998; Pinquart & Sorensen, 2003; Schneider et al., 1999).  Spousal caregivers of younger people with dementia have greater perceived difficulties than older spouses and greater level of caregiver burden (Arai, Matsumoto, Ikeda, & Arai, 2007; Harris, 2004; Zanetti et al., 1998; Freyne, Kidd, Coen, & Lawlor, 1999; Rosness, Mjorud, & Engedal, 2011).

EOD Spouses/Partners, cont’d  EOD spousal caregivers are more at risk of experiencing loneliness compared with other EOD caregivers such as parents or children (Luscombe, Brodaty, & Freeth, 1998).

EOD Spouses/Partners, cont’d  EOD will have a detrimental effect on the quality of the relationship (Harvey et al, 1998; Roach & Keady, 2008).  The point when EOD starts affects the relationship differently if couple still raising children or couple may be newly retired.

EOD and Children

When Dementia is in the House Dr. Tiffany Chow

How does EOD affect children?

When Dementia is in the House – Kids (

How EOD Affects Children  Children often experience wide range of emotions.  Younger children may be afraid that they will get the disease or that they did something to cause it.  Teenagers may become resentful when they have to take on more responsibilities for helping around the home. Or, they may feel embarrassed that their parent is “different.”  College-bound children may be reluctant to leave home to attend school. (from Alzheimer’s Society, USA website)

Support and Services for EOD caregivers.  Alzheimer’s Society.  On-line support group, Baycrest.  FTD self-help group.  FTD day program at Baycrest.

 Education  Information and Referral  Support  Resources  Living Safely  Public Awareness

On-line Support Group,Baycrest

FTD self-help group  Greater Toronto Area  FTD/Early Onset Dementia Caregivers  Meeting time: One Sunday each month at 1:00 PM. Contact facilitator to confirm dates.  Location: Swiss Chalet 1021 Wilson Ave. North York, ON M3K 1G7  Contact:

FTD Day Program, Baycrest Provides stimulation and respite for families. Specialized program for clients who have Frontotemporal Dementia (FTD) or frontal lobe disturbance who may be younger than 65 years old. The FTD program is in partnership with the Brain Health Centre Clinics at Baycrest.